tag:blogger.com,1999:blog-14762169627734581172024-02-18T18:42:06.768-08:00Information on Jonathan Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.comBlogger53125tag:blogger.com,1999:blog-1476216962773458117.post-28563061852609133612016-09-22T19:42:00.000-07:002016-09-22T19:42:58.108-07:00A Van Keulen Update!<div class="MsoNormal">
Well it has been about 3 months again since I posted a
blog.<span style="mso-spacerun: yes;"> </span>I often think I should sit down
and write but don’t really know what to say that isn’t redundant from something
I already posted.<span style="mso-spacerun: yes;"> </span>Through this entire
process I’ve tried to be so transparent so people knew what this is truly
like.<span style="mso-spacerun: yes;"> </span>At some level there was still
safety for me in this because literally I was just giving factual updates on
Jonathan’s physical condition.<span style="mso-spacerun: yes;"> </span>Or our
Physical experience.<span style="mso-spacerun: yes;"> </span>I would share how
we were coping and things Jonathan and I would share together.<span style="mso-spacerun: yes;"> </span>Now, there isn’t any of that.<span style="mso-spacerun: yes;"> </span>This is simply just talking about my
emotional state and what it is like to live after you loose your spouse.<span style="mso-spacerun: yes;"> </span>This is a much more vulnerable position for
me to be in I feel like, but here goes.<o:p></o:p></div>
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To start, I should admit I have probably consumed more
alcohol in the last 3 months than I have ever before.<span style="mso-spacerun: yes;"> </span>(Yes, even college… But I was married in
college so I wasn’t the typical 20 year old)<span style="mso-spacerun: yes;">
</span>I don’t think by any means I have a problem, but I have a completely
different social life now than I have ever experienced before.<span style="mso-spacerun: yes;"> </span>Girl friends want to go out for dinner and a
glass of wine.<span style="mso-spacerun: yes;"> </span>Or come over for a hot
tub and a glass of wine.<span style="mso-spacerun: yes;"> </span>I try to get
out and be social, it seems to help most of the time!<span style="mso-spacerun: yes;"> </span>Typically, in adult social settings, there is
alcohol.<span style="mso-spacerun: yes;"> </span>I’m not drinking at home by
myself, but I would need to change my medical questionnaire from “consumes
alcohol 2-4 per month” to “consumes alcohol 2-4 per week.”<span style="mso-spacerun: yes;"> </span>I know I’m not having a glass of wine when I’m
sad and I’m not doing it because it is going to make me feel better.<span style="mso-spacerun: yes;"> </span>I’m just recognizing this is something that
has changed in my life in the last few months.<o:p></o:p></div>
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Now with that being said, I’m so grateful for the friends I
have in my life.<span style="mso-spacerun: yes;"> </span>I loved having so many
people when Jon was sick, and I still I have a huge network of amazing friends.<span style="mso-spacerun: yes;"> </span>I have a wonderful neighbor friend that comes
over almost every Tuesday night to hang out and girl talk.<span style="mso-spacerun: yes;"> </span>I have friends that run with me now.<span style="mso-spacerun: yes;"> </span>I have friends that I now text all the time,
some times very late.<span style="mso-spacerun: yes;"> </span>I’ve connected
with old friends from high school who I get together with more than I have in
years.<span style="mso-spacerun: yes;"> </span>Then I still have my usual
friends that I see everyday at the gym or for BBQ’s.<span style="mso-spacerun: yes;"> </span>I have new “Cancer Friends” who understand
things no one else does.<span style="mso-spacerun: yes;"> </span>I so appreciate
these relationships because without them, the loneliness would be so much
worse.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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I have learned that I struggle with certain dates that are
going to inevitably come and go.<span style="mso-spacerun: yes;">
</span>Birthdays, anniversaries, holidays or events that we would be at
together.<span style="mso-spacerun: yes;"> </span>I hate being alone when these
things happen.<span style="mso-spacerun: yes;"> </span>The anticipation often
ends up being worse then the actual day or event.<span style="mso-spacerun: yes;"> </span>I over think it, or dwell on it and make
myself sad.<span style="mso-spacerun: yes;"> </span>So my tactic has been to
make sure I’m not alone when I know something is coming.<span style="mso-spacerun: yes;"> </span>In august, I was with family and friends
camping for our anniversary.<span style="mso-spacerun: yes;"> </span>Then to the
Lake with cousins.<span style="mso-spacerun: yes;"> </span>I was so busy and
with so many people that sitting and crying wasn’t really an option for me…
mostly because we were having fun and I didn’t need to!<span style="mso-spacerun: yes;"> </span>But then there are events like weddings,
showers etc.<span style="mso-spacerun: yes;"> </span>Normally I would have fun
and loved being happy for my friends.<span style="mso-spacerun: yes;"> </span>I
have found I don’t do well in these settings at times now.<span style="mso-spacerun: yes;"> </span>Often leave early and cry in the car on the
way home.<span style="mso-spacerun: yes;"> </span>I think people just want me to
get out and do normal things that I would normally love.<span style="mso-spacerun: yes;"> </span>But being reminded that others are so happy
and are experiencing the most wonderful parts of life, feels more like a
reminder that those parts of my life have ended. <span style="mso-spacerun: yes;"> </span>This last month I have made progress with this
though I think. I had a friend tell me she feels like I’m faking it less and
she sees parts of the old me again.<span style="mso-spacerun: yes;"> </span>But
she hit the nail on the head… acting happy for someone (Because you are happy
for them) but when you aren’t happy in general is a very hard place to be.<span style="mso-spacerun: yes;"> </span>I just hope my friends know I’m trying very
hard, even if I’m faking it.<o:p></o:p></div>
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Now that school has started and the auction has finished, I’m
getting back to a normal routine.<span style="mso-spacerun: yes;"> </span>At the
gym every week day morning and have nearly lost all of my pity party pounds I
gained 3 months ago.<span style="mso-spacerun: yes;"> </span>Dinner time is
really hard for me.<span style="mso-spacerun: yes;"> </span>I would cook for
Jonathan.<span style="mso-spacerun: yes;"> </span>Now I eat tuna out of the can
with a pickle, maybe a salad or something equally as pathetic and just make the
boys chicken nuggets or French toast.<span style="mso-spacerun: yes;">
</span>The boys don’t eat what I eat and so why would I cook for just me?<span style="mso-spacerun: yes;"> </span>I’m trying to be healthy so eating out isn’t
going to work either.<span style="mso-spacerun: yes;"> </span>So evenings are
often a reminder of big changes in my life.<span style="mso-spacerun: yes;">
</span>Typically I would have a huge taco feast and have the football game
on.<span style="mso-spacerun: yes;"> </span>(I truthfully haven’t really watched
one sporting event since Jonathan died.<span style="mso-spacerun: yes;">
</span>I think I’m avoiding it a little bit…) <span style="mso-spacerun: yes;"> </span>Now, No dinner and No sports!<span style="mso-spacerun: yes;"> </span>My poor boys… <o:p></o:p></div>
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This last weekend I met a girl my age who lost her husband
in a car accident.<span style="mso-spacerun: yes;"> </span>We talked about our difference
in experiences.<span style="mso-spacerun: yes;"> </span>The sudden shock or the
drawn out process.<span style="mso-spacerun: yes;"> </span>I also was talking to
my friend Harmony (Who lost her husband to cancer) about the loss we have
experienced with cancer.<span style="mso-spacerun: yes;"> </span>It is almost as
if you start grieving the day of diagnosis.<span style="mso-spacerun: yes;">
</span>Each day it felt like we lost something.<span style="mso-spacerun: yes;">
</span>The ability to walk, the ability to get on the floor with your kids,
intimate things, appearance… The list is long.<span style="mso-spacerun: yes;">
</span>By the time our spouses died, we had begun the process of loss months
ago. <o:p></o:p></div>
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I still get asked “how are you doing?”<span style="mso-spacerun: yes;"> </span>My answer “I’m doing really pretty good
actually.”<span style="mso-spacerun: yes;"> </span>Now if this is a closer
friend, after conversing for a while, I get the question “So did you and
Jonathan ever talk about you dating?”<span style="mso-spacerun: yes;">
</span>(If this is a really close friend, Jonathan actually talked to some of them
personally about it, or so I’m finding out now)<span style="mso-spacerun: yes;">
</span>I must be getting closer to that time frame in society where it would
start to become more socially acceptable for me to start dating now.<span style="mso-spacerun: yes;"> </span>But then again, I have people who tell me not
to even entertain the thought until after 1 year.<span style="mso-spacerun: yes;"> </span>Like that is a magic number… But maybe they
know something I don’t!<span style="mso-spacerun: yes;"> </span>And at 3 months
I was also asked why I wasn’t dating yet…<span style="mso-spacerun: yes;">
</span>So truthfully I don’t actually really know where I’m at with this.<span style="mso-spacerun: yes;"> </span>Yes, Jonathan and I talked about this.<span style="mso-spacerun: yes;"> </span>Actually in true Jonathan style, he was very
clear about what he wanted.<span style="mso-spacerun: yes;"> </span>He wanted
the boys to grow up with a dad.<span style="mso-spacerun: yes;"> </span>He didn’t
want me to be alone.<span style="mso-spacerun: yes;"> </span>But he wanted me to
find a really good one… He was never able to discuss specific details with me,
because it was supposed to be him.<span style="mso-spacerun: yes;"> </span>So no
he didn’t pick my next husband for me.<span style="mso-spacerun: yes;">
</span>But he was pretty clear about what he wanted me to do.<span style="mso-spacerun: yes;"> </span>I feel so blessed to have a relationship with
Jonathan’s mom that she has even openly talked to me about this in the last
couple months.<span style="mso-spacerun: yes;"> </span>She knew what he wanted
too… But I’m not totally there yet.<span style="mso-spacerun: yes;"> </span>I
really just want that singular best friend that fills all the roles that
requires multiple friends to fill.<span style="mso-spacerun: yes;"> </span>I
loved what I had and I want it back!<span style="mso-spacerun: yes;"> </span>I
want someone to plan trips with, and enjoy vacations.<span style="mso-spacerun: yes;"> </span>I miss having someone to talk to in the car
or talk just in general.<span style="mso-spacerun: yes;"> </span>I miss fun
activities, like biking, golfing, pickle ball (yeah, we have a court and no one
plays!)<span style="mso-spacerun: yes;"> </span>So maybe the better way to put
it is that I want a new best friend… Not really a “boyfriend”.<span style="mso-spacerun: yes;"> </span>Is that even possible?<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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So if you know me, you know I’m very sarcastic and try to
joke a lot. (often unsuccessfully)<span style="mso-spacerun: yes;"> </span>Shoot
the sarcasm came from Jonathan!<span style="mso-spacerun: yes;"> </span>I joke
about this being single thing a lot now. <span style="mso-spacerun: yes;"> </span>But there is a learning curve for me and an
adjustment period for others.<span style="mso-spacerun: yes;"> </span>While on a
trip with my cousin we were talking about this and he gave me great
perspective.<span style="mso-spacerun: yes;"> </span>I’m living without Jon
every day and it feels like forever that I haven’t had him.<span style="mso-spacerun: yes;"> </span>But for others who only see the boys and I
every couple of months.<span style="mso-spacerun: yes;"> </span>It feels so
fresh still to them.<span style="mso-spacerun: yes;"> </span>Like he should be
with us.<span style="mso-spacerun: yes;"> </span>So this isn’t just about me
either.<span style="mso-spacerun: yes;"> </span>I joke to lighten the mood, but
I know it isn’t all funny.<span style="mso-spacerun: yes;"> </span>I guess I
just thought I should clear the air on this topic… So for now I will just keep
praying for God to make this abundantly clear to me what is supposed to happen
with this, and that I don’t get so lonely that I do something stupid.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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What else is there to tell about this process… I have
noticed I don’t talk to Jonathan anymore at night before I go to bed.<span style="mso-spacerun: yes;"> </span>The boys still pray for Jesus to tell Daddy
they love him every night though.<span style="mso-spacerun: yes;"> </span>I’m
getting tired of being the only bad guy in the boy’s life.<span style="mso-spacerun: yes;"> </span>I never get to say “When your dad gets home!”<span style="mso-spacerun: yes;"> </span>And I’m the only parent to say “NO!”<span style="mso-spacerun: yes;"> </span>I think Jude tells me every day that “dad was
more fun than you mom.”<span style="mso-spacerun: yes;"> </span>I still haven’t
programmed my garage door opener to the car because I don’t know how.<span style="mso-spacerun: yes;"> </span>I can’t figure out my PayPal password.<span style="mso-spacerun: yes;"> </span>And Jonathan’s dress shirts are still on the
floor in my closet where they have been sitting for probably 1 year now.<span style="mso-spacerun: yes;"> </span>(My goal is to clean the closet this month, I
think I’m ready but it is overwhelming)<span style="mso-spacerun: yes;">
</span>I finally made the boys go to Children’s church and actually sat by
myself at church, without friends.<span style="mso-spacerun: yes;"> </span>Like
totally alone!<span style="mso-spacerun: yes;"> </span>I have something planned
every weekend through November… So still obviously trying to keep myself busy.<span style="mso-spacerun: yes;"> </span>Although my mom told me I was like this
before Jonathan died and she would be more concerned if I didn’t have anything
on my calendar.<span style="mso-spacerun: yes;"> </span>I have signed up to
start going to bible study again on Tuesday nights and Mom’s study once a month
in the morning.<span style="mso-spacerun: yes;"> </span>(Which means I might
have to explain my story and cry in front of people)<span style="mso-spacerun: yes;"> </span>I finally got brave enough to schedule family
photos without Jonathan, only 2 months behind normal.<span style="mso-spacerun: yes;"> </span>Jax lost another tooth and Jude laughs at me
when I try to spank him.<span style="mso-spacerun: yes;"> </span>It has probably
been 2 weeks since I cried last.<span style="mso-spacerun: yes;"> </span>I get
to go to The Price is Right with the girls and Chris Young concert with a
couple friends next month. I have a HUGE dog now.<span style="mso-spacerun: yes;"> </span>I guess that
is my life in a nut shell!<o:p></o:p></div>
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Bullet 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Bullet 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Bullet 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Bullet 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Number 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Number 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Number 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Number 5"/>
<w:LsdException Locked="false" Priority="1" QFormat="true" Name="Title"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Closing"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Signature"/>
<w:LsdException Locked="false" Priority="1" SemiHidden="true"
UnhideWhenUsed="true" Name="Default Paragraph Font"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text Indent"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Message Header"/>
<w:LsdException Locked="false" Priority="2" QFormat="true" Name="Subtitle"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Salutation"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Date"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text First Indent"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text First Indent 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Note Heading"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text Indent 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text Indent 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Block Text"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Hyperlink"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="FollowedHyperlink"/>
<w:LsdException Locked="false" Priority="22" QFormat="true" Name="Strong"/>
<w:LsdException Locked="false" Priority="20" QFormat="true" Name="Emphasis"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Document Map"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Plain Text"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="E-mail Signature"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Top of Form"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Bottom of Form"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Normal (Web)"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Acronym"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Address"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Cite"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Code"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Definition"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Keyboard"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Preformatted"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Sample"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Typewriter"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Variable"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Normal Table"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="annotation subject"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="No List"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Outline List 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Outline List 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Outline List 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Simple 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Simple 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Simple 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Colorful 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Colorful 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Colorful 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 6"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 7"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 8"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 6"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 7"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 8"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table 3D effects 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table 3D effects 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table 3D effects 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Contemporary"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Elegant"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Professional"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Subtle 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Subtle 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Web 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Web 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Web 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Balloon Text"/>
<w:LsdException Locked="false" Priority="39" Name="Table Grid"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Theme"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Note Level 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Note Level 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Note Level 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Note Level 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Note Level 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Note Level 6"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Note Level 7"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Note Level 8"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Note Level 9"/>
<w:LsdException Locked="false" SemiHidden="true" Name="Placeholder Text"/>
<w:LsdException Locked="false" Priority="1" QFormat="true" Name="No Spacing"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading"/>
<w:LsdException Locked="false" Priority="61" Name="Light List"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 1"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 1"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 1"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 1"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 1"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 1"/>
<w:LsdException Locked="false" SemiHidden="true" Name="Revision"/>
<w:LsdException Locked="false" Priority="34" QFormat="true"
Name="List Paragraph"/>
<w:LsdException Locked="false" Priority="29" QFormat="true" Name="Quote"/>
<w:LsdException Locked="false" Priority="30" QFormat="true"
Name="Intense Quote"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 1"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 1"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 1"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 1"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 1"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 1"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 1"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 1"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 2"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 2"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 2"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 2"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 2"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 2"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 2"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 2"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 2"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 2"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 2"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 2"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 2"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 2"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 3"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 3"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 3"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 3"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 3"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 3"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 3"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 3"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 3"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 3"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 3"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 3"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 3"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 3"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 4"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 4"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 4"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 4"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 4"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 4"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 4"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 4"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 4"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 4"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 4"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 4"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 4"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 4"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 5"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 5"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 5"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 5"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 5"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 5"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 5"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 5"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 5"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 5"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 5"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 5"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 5"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 5"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 6"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 6"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 6"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 6"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 6"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 6"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 6"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 6"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 6"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 6"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 6"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 6"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 6"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 6"/>
<w:LsdException Locked="false" Priority="19" QFormat="true"
Name="Subtle Emphasis"/>
<w:LsdException Locked="false" Priority="21" QFormat="true"
Name="Intense Emphasis"/>
<w:LsdException Locked="false" Priority="31" QFormat="true"
Name="Subtle Reference"/>
<w:LsdException Locked="false" Priority="32" QFormat="true"
Name="Intense Reference"/>
<w:LsdException Locked="false" Priority="33" QFormat="true" Name="Book Title"/>
<w:LsdException Locked="false" Priority="37" SemiHidden="true"
UnhideWhenUsed="true" Name="Bibliography"/>
<w:LsdException Locked="false" Priority="39" SemiHidden="true"
UnhideWhenUsed="true" QFormat="true" Name="TOC Heading"/>
<w:LsdException Locked="false" Priority="41" Name="Plain Table 1"/>
<w:LsdException Locked="false" Priority="42" Name="Plain Table 2"/>
<w:LsdException Locked="false" Priority="43" Name="Plain Table 3"/>
<w:LsdException Locked="false" Priority="44" Name="Plain Table 4"/>
<w:LsdException Locked="false" Priority="45" Name="Plain Table 5"/>
<w:LsdException Locked="false" Priority="40" Name="Grid Table Light"/>
<w:LsdException Locked="false" Priority="46" Name="Grid Table 1 Light"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark"/>
<w:LsdException Locked="false" Priority="51" Name="Grid Table 6 Colorful"/>
<w:LsdException Locked="false" Priority="52" Name="Grid Table 7 Colorful"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 1"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 1"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 1"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 1"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 1"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 2"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 2"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 2"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 2"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 2"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 3"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 3"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 3"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 3"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 3"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 3"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 3"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 4"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 4"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 4"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 4"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 4"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 5"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 5"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 5"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 5"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 5"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 5"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 5"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 6"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 6"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 6"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 6"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 6"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 6"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 6"/>
<w:LsdException Locked="false" Priority="46" Name="List Table 1 Light"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4"/>
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<!--EndFragment--><br />
<div class="MsoNormal">
I’m hoping 3 months from now my next post will have more
positive in it and things will continue to get better.<span style="mso-spacerun: yes;"> </span>I feel like things have improved in the last
3 months! Glass half full right?!<o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.com4tag:blogger.com,1999:blog-1476216962773458117.post-23608065863001748792016-06-30T07:58:00.000-07:002016-06-30T07:58:14.309-07:003 Month Mark<div class="MsoNormal">
It’s almost been 3 months since Jonathan passed away.<span style="mso-spacerun: yes;"> </span>I’ve been having a hard time sleeping for
some reason the last few days, so I thought I would write a blog update.<span style="mso-spacerun: yes;"> </span>People always ask how things are going so
hopefully this will give some insight into what this is like. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I don’t write many blog updates anymore because I feel like
there isn’t much to say that you all don’t already know.<span style="mso-spacerun: yes;"> </span>I’m Sad!<span style="mso-spacerun: yes;">
</span>That pretty much sums it up.<span style="mso-spacerun: yes;"> </span>My
aunt Shannon has been encouraging me to continue writing as that has been my
therapy through these last 2 years.<span style="mso-spacerun: yes;"> </span>My
friend gave me a journal, so I have been hand writing to the boys about their
dad.<span style="mso-spacerun: yes;"> </span>I started at the day I first
remember meeting him.<span style="mso-spacerun: yes;"> </span>What he was like
way back then, what he smelled like, his personality, his green car with the squeaky
door.<span style="mso-spacerun: yes;"> </span>Literally everything I can
remember.<span style="mso-spacerun: yes;"> </span>I think it is helping me.<span style="mso-spacerun: yes;"> </span>Some nights I fall asleep laughing, and some
nights I cry.<span style="mso-spacerun: yes;"> </span>Some nights I don’t write
anything at all.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Truthfully the boys are really doing very well.<span style="mso-spacerun: yes;"> </span>They don’t get sad much anymore.<span style="mso-spacerun: yes;"> </span>They talk about daddy every day though.<span style="mso-spacerun: yes;"> </span>How he made better pancakes than me, how he
would have thought something was funny, how he would brush their teeth, or that
he would let them get a slushy and I never do.<span style="mso-spacerun: yes;">
</span>We went golfing this week and they had to show me the secret hole dad
showed them at Manito.<span style="mso-spacerun: yes;"> </span>(I know, it’s
almost July and it’s the first time I’ve taken them golfing.<span style="mso-spacerun: yes;"> </span>Jonathan would be ashamed of me!)<span style="mso-spacerun: yes;"> </span>The boys told me dad always let them have
raspberry tea when they golfed, so we got some tea and they had a wonderful
time.<span style="mso-spacerun: yes;"> </span>Jax is getting stronger and Jude
is really picking it up as well.<span style="mso-spacerun: yes;"> </span>I feel
like Jax is a bit sensitive at times, but he has always been that kid.<span style="mso-spacerun: yes;"> </span>So I don’t think it is because of Jonathan
anymore.<span style="mso-spacerun: yes;"> </span>They are adjusting really well
and overall are very happy kids excited to ride bikes and swim.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAXVHoQmFFPaRpV0zwPrKbMf43mzftjVicGIjjLz-onDYhXRhcwMfnUab2UxLt1TOXafCsloW90Q0vaoZRkrb8A-aotTZcqFhje-pnKkM3FOsZ7GxRtxLuIhrJDKc66WuynKxwv0ENWKuW/s1600/IMG_2115.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAXVHoQmFFPaRpV0zwPrKbMf43mzftjVicGIjjLz-onDYhXRhcwMfnUab2UxLt1TOXafCsloW90Q0vaoZRkrb8A-aotTZcqFhje-pnKkM3FOsZ7GxRtxLuIhrJDKc66WuynKxwv0ENWKuW/s320/IMG_2115.jpg" width="240" /></a></div>
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<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This last month has gotten hard for me.<span style="mso-spacerun: yes;"> </span>I think I’m making progress and trying to do
things to push myself forward.<span style="mso-spacerun: yes;"> </span>I took my
wedding ring off at Christmas because Jonathan bought me a new ring that isn’t
a wedding ring but something he thought I could wear forever.<span style="mso-spacerun: yes;"> </span>I had been wearing it as a wedding ring, but
I went to have it resized to move to my other hand.<span style="mso-spacerun: yes;"> </span>That was where he intended it to be.<span style="mso-spacerun: yes;"> </span>He wanted me to be ok, and move forward.<span style="mso-spacerun: yes;"> </span>He wanted me to be happy.<span style="mso-spacerun: yes;"> </span>So I’m really trying.<span style="mso-spacerun: yes;"> </span>I packed my first box this month of his golf
hats and clothes and moved them to storage for the boys.<span style="mso-spacerun: yes;"> </span>As I went through all his hats (he bought a
hat at each new course he would play) I thought how cool it would be for the
boys to go through those later in life and try to go play some of those courses
their dad played.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I went to a grief seminar this month with my friend Harmony
who is just a couple month ahead of me on this not so fun path.<span style="mso-spacerun: yes;"> </span>We weren’t very impressed with the seminar,
but we had a good time together afterward at dinner.<span style="mso-spacerun: yes;"> </span>I guess I just already knew that I’m trying
to keep myself super busy so I don’t have to think about things.<span style="mso-spacerun: yes;"> </span>The scale has told me I’m eating as a coping
mechanism.<span style="mso-spacerun: yes;"> </span>Yeah so how do I fix it?<span style="mso-spacerun: yes;"> </span>Oh and I don’t think about dying so I could
be with Jonathan, I’m not walking the slippery slope of suicide talk.<span style="mso-spacerun: yes;"> </span>(That was like 45 minutes of the seminar… it
is normal but a slippery slope LOL)<span style="mso-spacerun: yes;">
</span>Since I didn’t get any great advice on how to fix me, I decided I guess
I just have to do it myself.<span style="mso-spacerun: yes;"> </span>I’ve tried
to check out a little bit from Cancer Can’t at night time to just be, and I’ve
lost 5 pounds.<span style="mso-spacerun: yes;"> </span>Only 10 more to go… then
I’ll be back to where I started 2 years ago.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Dad has moved back out and went home.<span style="mso-spacerun: yes;"> </span>So I’ve been alone for about a month now with
just the boys.<span style="mso-spacerun: yes;"> </span>I think he has discovered
he enjoys retirement and sitting down to a cup of coffee that hasn’t been
microwaved 4 times is much more enjoyable.<span style="mso-spacerun: yes;">
</span>When he is here, he is totally checked in and the kids know it.<span style="mso-spacerun: yes;"> </span>Papa is on duty and they take full
advantage.<span style="mso-spacerun: yes;"> </span>So we miss papa, but it is
probably good that we start doing this alone.<span style="mso-spacerun: yes;">
</span>Or at least that is what we are being told… I would be fine with dad
living here.<span style="mso-spacerun: yes;"> </span>Judge me all you want!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Now that it’s just me and the boys, I’m realizing how lonely
I actually am.<span style="mso-spacerun: yes;"> </span>The days are usually ok
because I keep myself busy, but nights are really hard.<span style="mso-spacerun: yes;"> </span>My friends go home to their husbands and
kids, and hanging out until 10 isn’t super appealing when you have to work the
next day and they want to be with your own family.<span style="mso-spacerun: yes;"> </span>I get it.<span style="mso-spacerun: yes;">
</span>When Jonathan and I did marriage counseling, we read this book called
the 5 love languages by Gary Chapman.<span style="mso-spacerun: yes;">
</span>(Highly recommend)<span style="mso-spacerun: yes;"> </span>In my loneliness
I have been thinking about this concept.<span style="mso-spacerun: yes;">
</span>Maybe I’m having a pity party here, but my love language happens to be
physical touch.<span style="mso-spacerun: yes;"> </span>Could there be a worse
love language to have when you loose your spouse?<span style="mso-spacerun: yes;"> </span>I love getting flowers (gifts), and I love
spending time with friends (quality time), I appreciate kinds words (words of
affirmation), and people have done so many things for me (acts of
service).<span style="mso-spacerun: yes;"> </span>But what I really want is a
real hug.<span style="mso-spacerun: yes;"> </span>Not like the hello/goodbye hug
that I get every day, but to be held.<span style="mso-spacerun: yes;"> </span>I
miss just snuggling up on the couch to watch tv, or even when he would smack my
butt in the kitchen while I’m cooking.<span style="mso-spacerun: yes;"> </span>I’m
pretty sure I could talk one of my friends into smacking my butt now and again,
but I just don’t think it will be the same gesture.<span style="mso-spacerun: yes;"> </span>It’s kind of weird to think about anyone
other than your companion fulfilling the love language of physical touch.<span style="mso-spacerun: yes;"> </span>I mean I can think of 2 times since Jonathan
died that I had someone show me love in this way.<span style="mso-spacerun: yes;"> </span>I snuggled with my dad on the couch one night
while watching tv, and my cousin Ryan put his arm around me on a tee box while
golfing and just rubbed my arm for a few moments.<span style="mso-spacerun: yes;"> </span>So not that any wife wouldn’t miss the touch
of their spouse, but maybe the need is just greater when that is your love
language.<span style="mso-spacerun: yes;"> </span>When it is anyone other than
your companion, the gesture could seem weird.<span style="mso-spacerun: yes;">
</span>(So no need for anyone to attempt to smack me on the butt)<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The other night Jude put on Jonathan’s deodorant after his
bath.<span style="mso-spacerun: yes;"> </span>It wasn’t just a little bit under
his pits, I watched him do his neck, and pull his waist band out and put it
just below is belly button. (Not sure where he saw this, I don’t think Jonathan
put deodorant there… but maybe if he was trying to get lucky or something)<span style="mso-spacerun: yes;"> </span>Anyway, when I went to check on Jude before
going to sleep when I gave him a kiss he smelled like Jonathan.<span style="mso-spacerun: yes;"> </span>So I picked him up and brought him to bed
with me.<span style="mso-spacerun: yes;"> </span>I snuggled him until I fell
asleep, mostly because I just wanted to smell him and feel like I was snuggling
Jonathan.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Many of you may not know that Jonathan wanted to donate his
body so that they could study his cancer.<span style="mso-spacerun: yes;">
</span>He felt very strongly about his body being an empty vessel and that it
wasn’t him anymore.<span style="mso-spacerun: yes;"> </span>So we didn’t bury
him, or put him in a wall somewhere.<span style="mso-spacerun: yes;"> </span>BUT
when you donate your body, when they are done, they send you cremated
remains.<span style="mso-spacerun: yes;"> </span>I got those in the mail last
week.<span style="mso-spacerun: yes;"> </span>Yep, they mailed him to me!<span style="mso-spacerun: yes;"> </span>My dad had no idea what he was signing for
when he was visiting that day.<span style="mso-spacerun: yes;"> </span>He set
Jonathan on the counter and Jude colored all over the box.<span style="mso-spacerun: yes;"> </span>Haha <span style="mso-spacerun: yes;"> </span>Life is right back to normal for him I
guess.<span style="mso-spacerun: yes;"> </span>So now I need to plan a few trips
to scatter ashes I guess.<span style="mso-spacerun: yes;"> </span>The boys keep
asking about Maui!<span style="mso-spacerun: yes;"> </span>Sounds like a good
plan to me.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="header"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="footer"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="index heading"/>
<w:LsdException Locked="false" Priority="35" SemiHidden="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="table of figures"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="envelope address"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="envelope return"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="footnote reference"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="annotation reference"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="line number"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="page number"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="endnote reference"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="endnote text"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="table of authorities"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="macro"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="toa heading"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Bullet"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Number"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Bullet 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Number 5"/>
<w:LsdException Locked="false" Priority="10" QFormat="true" Name="Title"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Signature"/>
<w:LsdException Locked="false" Priority="1" SemiHidden="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text Indent"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Message Header"/>
<w:LsdException Locked="false" Priority="11" QFormat="true" Name="Subtitle"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Date"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text First Indent 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Hyperlink"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="FollowedHyperlink"/>
<w:LsdException Locked="false" Priority="22" QFormat="true" Name="Strong"/>
<w:LsdException Locked="false" Priority="20" QFormat="true" Name="Emphasis"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Plain Text"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="E-mail Signature"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Top of Form"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Normal (Web)"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Acronym"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Address"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Cite"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Code"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Keyboard"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Preformatted"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Typewriter"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="No List"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Outline List 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Outline List 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Colorful 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table 3D effects 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Elegant"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Subtle 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" Priority="39" Name="Table Grid"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" Name="Placeholder Text"/>
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<w:LsdException Locked="false" Priority="60" Name="Light Shading"/>
<w:LsdException Locked="false" Priority="61" Name="Light List"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 1"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 1"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 1"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 1"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 1"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 1"/>
<w:LsdException Locked="false" SemiHidden="true" Name="Revision"/>
<w:LsdException Locked="false" Priority="34" QFormat="true"
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<w:LsdException Locked="false" Priority="29" QFormat="true" Name="Quote"/>
<w:LsdException Locked="false" Priority="30" QFormat="true"
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<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 1"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 1"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 1"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 1"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 1"/>
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<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 1"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 1"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 2"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 2"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 2"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 2"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 2"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 2"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 2"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 2"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 2"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 2"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 2"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 2"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 2"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 2"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 3"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 3"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 3"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 3"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 3"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 3"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 3"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 3"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 3"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 3"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 3"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 3"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 3"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 3"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 4"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 4"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 4"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 4"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 4"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 4"/>
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<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 4"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 4"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 4"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 4"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 4"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 4"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 4"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 5"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 5"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 5"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 5"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 5"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 5"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 5"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 5"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 5"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 5"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 5"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 5"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 5"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 5"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 6"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 6"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 6"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 6"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 6"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 6"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 6"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 6"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 6"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 6"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 6"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 6"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 6"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 6"/>
<w:LsdException Locked="false" Priority="19" QFormat="true"
Name="Subtle Emphasis"/>
<w:LsdException Locked="false" Priority="21" QFormat="true"
Name="Intense Emphasis"/>
<w:LsdException Locked="false" Priority="31" QFormat="true"
Name="Subtle Reference"/>
<w:LsdException Locked="false" Priority="32" QFormat="true"
Name="Intense Reference"/>
<w:LsdException Locked="false" Priority="33" QFormat="true" Name="Book Title"/>
<w:LsdException Locked="false" Priority="37" SemiHidden="true"
UnhideWhenUsed="true" Name="Bibliography"/>
<w:LsdException Locked="false" Priority="39" SemiHidden="true"
UnhideWhenUsed="true" QFormat="true" Name="TOC Heading"/>
<w:LsdException Locked="false" Priority="41" Name="Plain Table 1"/>
<w:LsdException Locked="false" Priority="42" Name="Plain Table 2"/>
<w:LsdException Locked="false" Priority="43" Name="Plain Table 3"/>
<w:LsdException Locked="false" Priority="44" Name="Plain Table 4"/>
<w:LsdException Locked="false" Priority="45" Name="Plain Table 5"/>
<w:LsdException Locked="false" Priority="40" Name="Grid Table Light"/>
<w:LsdException Locked="false" Priority="46" Name="Grid Table 1 Light"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark"/>
<w:LsdException Locked="false" Priority="51" Name="Grid Table 6 Colorful"/>
<w:LsdException Locked="false" Priority="52" Name="Grid Table 7 Colorful"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 1"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 1"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 1"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 1"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 1"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 2"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 2"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 2"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 2"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 2"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 3"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 3"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 3"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 3"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 3"/>
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<div class="MsoNormal">
Overall though I think I’m doing ok.<span style="mso-spacerun: yes;"> </span>I think being lonely is just what I’m going
to have to go through.<span style="mso-spacerun: yes;"> </span>I still laugh
everyday and try to live how Jon would want me to.<span style="mso-spacerun: yes;"> </span>He showed Christ in the way he lived by
always being so positive, and caring of others while in the midst of fighting a
battle he never deserved.<span style="mso-spacerun: yes;"> </span>I’m trying to
honor both Jon and Christ by being ok, moving forward, do what he told me to do,
laugh, and see the good and beautiful things around me.<span style="mso-spacerun: yes;"> </span>I know many of you are still praying for me
and the boys.<span style="mso-spacerun: yes;"> </span>We appreciate that very
much.<o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.com5tag:blogger.com,1999:blog-1476216962773458117.post-22175430985706279742016-05-16T23:50:00.004-07:002016-05-16T23:50:41.569-07:00The Blog I've been avoiding...<div class="MsoNormal">
I’ve been avoiding writing since Jonathan died. I think about sitting down to write a blog
update all the time. I seem to always
find something else to do instead though.
During Jonathan’s treatment writing often was therapeutic for me but now
what do I have to write about? Everyone
already knows this part is hard. I
almost don’t know what to say. I think I
also haven’t written because I’m afraid to share what I was writing about 6
weeks ago. As Jonathan was passing, I
sat down each night and briefly wrote what happened each day. I wanted to remember so I could tell the boys
as they grew about when daddy went to heaven.
But as I read through what I wrote and think of what the last 4 days of
his life were, it is very hard to read.
His last few days were mostly horrible.
So I want to warn anyone reading this, that what you are about to read
is awful. I’ve been around death a
little, and heard people talk about death of their loved one. This wasn’t peaceful and was nothing like how
Jonathan and I wanted this to go. I have
a hard time thinking about it. I’ve
debated on even sharing this, but one thing I have done through this entire
journey is be open. Real. Raw. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Friday Aril 1<sup>st</sup> <o:p></o:p></div>
<div class="MsoNormal">
Tonight I sit on the couch, in my makeshift bed, wide awake
as I watch Jonathan. I close my eyes for
a minute but I can’t sleep because I can hear him gasping for air. He is asleep.
He says he is comfortable. He tells me he isn’t in pain. But as I watch him breath I can’t imagine how
he could be comfortable. He takes a
large quick breath in and then pushes it out with such force. This is followed by a motion where his
shoulders raise and his chest presses back as you then hear a high pitch
whistle sound. I wonder how long can
this go on? I got up on the hospital bed
with him that hospice brought. I just
held him for a while. I began to cry and
I can tell that upsets him and his breathing becomes even more labored as he
begins to cry. I know he gets scared of
the feeling when he can’t breathe, so I try to gather myself and keep him calm. He whispers to me “I’m Sorry you have to go
through this.” I told him I would do it
all over again. He is worth it and I
will miss him beyond what he could ever imagine. He tells me he feels sort of afraid. He doesn’t know what this is going to feel
like to die. Then he jokes, “Well you
know, no one has really ever lived to tell about it.” After he falls back to sleep I make my way
back to the couch where I sit now typing.
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I can hear Jax in the next room coughing in his sleep. I begin thinking about our incredibly sweet
boy. This morning I told the boys as
they had breakfast that I think it might be time to say goodbye to daddy. I would have grammy come get them and they
could play there until daddy goes to heaven.
Jude was totally content with that plan.
Jax on the other hand, looks at me and says “I don’t want to do
that.” I told him that I don’t know what
is going to happen and I don’t want him to be afraid or see anything that might
make him afraid. He says “Mom, if I feel
afraid I can go hide in my room until you tell me it is ok to come out.” I told him that I would talk to daddy about
what we are going to do but that I want him to know I hear what he is telling
me he wants, but that what we decide to do is what we think is best for
him. Later that morning I began to tell
Jonathan what Jax said. I think he heard
me because he came out of his room from getting dressed and walked right up to
Jonathan’s bed. He looked at his dad and
says “Daddy, I want to be here to help you.
I want to be here when you die and go to your new body. If I feel scared, I will go into my room
until mom says its ok. Can I please stay
with you?” Jonathan and Jax both began
to cry and Jon gave Jax a big hug. He
told him he was so proud of him and he is so brave and kind to want to
help. He told Jax to let us talk about
it and we would let him know what we decide.
I’m worried about what he may see, but I’m also worried he will hold
anger at me for not letting him stay with his dad. So I talked to the therapists and we told Jax
he could stay. We are going to take this
minute by minute. We will try to explain
what he can expect the best we can. He
has been helpful today. He sat and read
books to Jonathan. He did legos for
hours on the floor by his bed. He made
daddy a note and put a picture on it for him.
He helped turn on and off the nebulizer and the oxygen when daddy needed
extra breathing treatments. Until
Jonathan told him he had to go play outside for an hour or so, Jax never left
his side. He truly loves his daddy, and
not so surprising that he has a very similar heart as his daddy. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Saturday April 2<sup>nd</sup> <o:p></o:p></div>
<div class="MsoNormal">
Today was difficult.
Jonathan is becoming agitated and not totally aware of everything. It is weird because at times he doesn’t seem
to understand certain things. (Like why he can’t shower because he can barely
stand so he gets mad and throws a towel at me saying a swear word… This was the
first time in our marriage he swore at me!)
Other times he seems totally normal and coherent. My dad followed me to my room to comfort me
after one of Jonathan’s outbursts as he knew that bothered me. He wasn’t acting like my Jonathan. He never raised his voice at me and NEVER
would swear at me. My dad reminded me
that this isn’t Jonathan. This is the
medications and warned me it may get worse.
Luckily that didn’t get worse today.
He is completely aware of awkward moments and tries to crack a joke as
usual. Today the nurses decided they
needed to give him an enema because he hadn’t went to the bathroom for a few
days. He can’t walk very well and
refuses to go on the portable toilet. My
dad told him he would help Jon get to the bathroom because Jon didn’t want me
around to see this. So as my dad held
him on the toilet Jonathan made sure to tell him he ordered a 2 for 1
special. Next it was my dad’s turn. My dad enjoyed the joke and has always loved
Jonathan’s sense of humor. I’m so
grateful to have my dad today. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Jonathan was so uncomfortable and I feel like I’m starting
to give him so much medication. The
nurses are trying so hard to help me get him comfortable. Jonathan seems to be metabolizing the
medications far faster than the typical patient. He is not resting peacefully, and doses are
maybe making it half the time they should.
I don’t understand this suffering and hope Jesus will take him
soon. But tonight as I write, I can tell
you why Jesus hasn’t taken him yet!<o:p></o:p></div>
<div class="MsoNormal">
Jonathan feels like tonight is the night. As in the night he gets to meet Jesus. He told me he wanted to tell the boys
goodbye. So he had Jax crawl up on the
bed and Jonathan told him so many special things. They both cried and embraced for a
while. Then it was Jude’s turn. He crawled up on the bed and once again
Jonathan told Jude everything he needed to say.
They cried and held each other for a while. I then noticed Jax had went to his room so I went
to make sure he was ok. As I walked in,
he was walking to me with a book. (This
is a salvation book I bought a few years back that Jon and I have each read a
handful of times to him. There is a
prayer at the back of the book where you accept Jesus as your personal
savior. We’ve told the boys when they
are ready to say this prayer that they can tell us.) Jax looked up at me and says “I’m ready to
say this prayer mommy, can I say this prayer with you and daddy tonight?” So tonight Jax and I sat at the foot of
Jonathan’s death bed, and Jax accepted Jesus Christ as his personal
savior. He just gave Jonathan the best
gift you could ever give a parent. It
was incredible. Then as Jonathan hugged
Jax for the last time, like every night before, he whispered into his year, “I’ll
see you first buddy.” Tonight it brought
an entirely new meaning. He will not see
him first in the morning but will be waiting for Jax in heaven. As I put Jax to bed, he whispered in my ear
that he was ready to go to grandma’s house and he didn’t want to stay
anymore. I told him they could leave
first thing in the morning. I hope
Jonathan has a better night and goes quickly.
My dad is going to stay up with me as he is noticing that this is
beginning to get too hard for me to do alone and I’m exhausted.<br />
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Sunday April 3<sup>rd</sup> <o:p></o:p></div>
<div class="MsoNormal">
Jonathan is still with us.
Last night was awful! He can’t
get comfortable, I’m giving him as much medication as I can and he isn’t
sleeping. He has been calling out to God
to take him, he is ready to go. My dad
and I tried to take shifts last night but he always is calling out for me. He just wants me. It is so sweet, but I’m also so tired. I think I was able to sleep from 2 am to
3:30. My dad tried to let me sleep at
like 5 to 6 but Jonathan started to get really agitated again. I finally just had to call the nurses to help
us. This is just too much. I also called Jonathan’s Mom and told her to
pack a bag to come over as well. This is
becoming a two person job and we need to be able to have a break. I think a team of 3 is now a minimum
requirement. The nurses arrived first
thing in the morning and are beginning to give him enough meds to tranquilize a
horse. It is working for a little while
but the nurses are shocked at how fast he is metabolizing these meds as well. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am grateful for a few moments of lucidity that he had
today. Again today we had a few awkward
moments that Jonathan quickly lightened with his humor. In a state of agitation he must have ripped
off his condom Catheter he was wearing.
So he ended up peeing the bed when he thought it was still on. So my dad helped me get him up and cleaned
off. I got the sheets changed, and so as
I was in the bathroom cleaning the urine bag, Jonathan was laying out on the
bed totally naked. I hear him yell at me
“Hey hun, don’t hurry or anything, it isn’t like I’m laying here with my dick
out of anything!” So I hurried along and
got everything ready to put on a new condom cath. As I was putting this condom thing on him I
look up at my dad to say, “Well this is awkward… never put a condom on a guy in
front of my dad.” Jonathan quickly took
the opportunity to pipe in. “Well Randy,
you know if my pecker wasn’t so big I wouldn’t have shot the first one off in
the first place!” He still has his sense
of humor just minus a filter apparently!
Later that day He held me and kissed me over and over as we both had
tears pouring down our faces. He was holding
my face to his so he could feel close to me and I just feel like he was saying
goodbye forever. He never said it, but I
could feel it. He told me how much he
loved me. This normally would feel odd
to me kissing so much with people watching as my dad and his mom sat on the
couch next to the bed and saw the entire thing.
He even turned and apologized to all of us in the room for taking so
long to die. He just didn’t know how to
do it and he was so sorry to put us through this. (I know right?) So Jonathan and I together decided to stop
giving him water and food. He needed
sips of water to swallow pills but I told him if he asked for food or water
beyond that I would not let him have it.
<o:p></o:p></div>
<div class="MsoNormal">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNfWlCNubvvqTTEDSV792n08xLgJ7lUy5huLMPvJ1l53XYzdRbsQ9Lb0pdATT-YHX5VnK-gNcwFiHg-a7L0iv-PvegkclCNAg-ca85L7SVow99kZdIVxQ38F0Qael-Z9I-8ikr_89SwhuB/s1600/IMG_1626.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNfWlCNubvvqTTEDSV792n08xLgJ7lUy5huLMPvJ1l53XYzdRbsQ9Lb0pdATT-YHX5VnK-gNcwFiHg-a7L0iv-PvegkclCNAg-ca85L7SVow99kZdIVxQ38F0Qael-Z9I-8ikr_89SwhuB/s320/IMG_1626.JPG" width="240" /></a></div>
<div style="text-align: center;">
(My last photo with Jonathan)</div>
<br /></div>
<div class="MsoNormal">
Most of the day I would try to lay beside him in bed. My ear is beginning to really really hurt
from laying and crying. I think I’ve
gotten fluid in my ear. My dad has been
an absolute angel to Jonathan through this.
These Hospice nurses have been awesome and Jonathan’s mother was just
what I needed. I knew that if I left the
room for a moment he was being loved and taken care of with the most
compassion. The support system I had in
place was perfect. Jonathan kept asking
today if the boys knew he was going. He
often asked if Scott knew what was happening.
When his mom wasn’t there he would ask if she knew he was going to
die. If I wasn’t there, he wanted me to
be there constantly. The nurses from
hospice stayed all day trying to get his medication regime down. In fact they are scheduled to stay until 1 a.m. tonight. Amy the nurse told me I needed
to go sleep. So I’m going to hit the pillow
for as long as I can. I pray his
suffering will end soon. But for now he
is actually sleeping so I will try to do the same. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Monday April 4<sup>th</sup> <o:p></o:p></div>
<div class="MsoNormal">
Jonathan went to meet Jesus today. I’m incredibly sad for me, but so glad he is
no longer suffering. These last few days
have been awful. I spent most of the
morning laying with Jonathan. He sleeps
for an hour or so before he wakes and is moaning in pain. He can’t see really, he is unable to swallow
now and we are having such a hard time with meds. He keeps choking and this is almost
unbearable to watch. At times all 3 of
us are required to help him. It has been
nice having 3 of us as well as a nurse. We
often need a break. After pastor Joe
came to visit I went down for a quick lunch.
When I came back up Jonathan’s breathing began to change. He was asleep and I think his heart must have
finally began to give out. I held his
left hand as his mom held his right. We
cried as he took his last breath. I took
the ring off his finger and put it on my hand.
As he started to change color and his hand began to get colder I knew
this was not what Jonathan wanted me to see.
He had left his vessel and was no longer there. So I went down stairs and walked into the
back yard. It had been raining all
morning and was windy and cold. But as I
walked into the back yard the wind stopped.
I had my head down, my eyes closed and then I felt something warm on my
face. As I opened my eyes, the clouds
had parted and the sun was coming through the tall pine trees behind our house. I just sat there for a minute holding my face
where I could feel the warm sun touching me.
It was exactly what I needed. It
was my message. He was with Christ now,
and he was ok. He was perfect, and I
finally experienced peace just for a moment.
Then the wind picked up, the sun went behind the trees and suddenly I
was cold again. I turned around and my
dad was waiting for me at back door. We
hugged and cried for a bit before I asked him what I was supposed to do
now. We decided to sit down and just
take a second. I needed to catch my
breath and figure out what to do. We began
discussing how the boys should be told.
I wanted them to come home, I needed them now. <o:p></o:p></div>
<div class="MsoNormal">
My dad called my mom to tell her how we wanted to tell the
boys. She and my older sister and
brother told the boys shortly after we called.
They decided they needed to tell dad they loved him before they came
home. So uncle randy got them some
balloons to send up. Then they were on
their way home to me.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Scott and Heidi came over and helped clean the house up
after they took Jonathan’s body. They
wanted the house to be back to normal when the boys got home. Tonight the boys are on each side of me in
bed. I couldn’t be alone tonight. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Today May 16, 2016<o:p></o:p></div>
<div class="MsoNormal">
I will continue to blog and let you know how we are doing
now. I've been feeling guilty for not writing. I’m trying to be normal but lately
it seems so forced. Nothing feels
good. There are so many things every day
that make me think of Jonathan and why I miss him. I think I'm about 4 pounds away from the weight I was when I gave birth to Jax. I seem to be eating as a coping mechanism... So I'm now trying to get a grip on that! I hate that I don't feel normal. Things I used to enjoy I just don't. (Unless it is a cookie apparently) The boys are doing ok. We talk about daddy all the time. They miss him. Often Jude will ask if Jesus will let daddy come back for just one more day. Jax says he wants to go to heaven so he can be with daddy. He is much more sensitive and isn't doing as well. But all things considering we are putting one foot in front of the other. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I do want to share a couple of things
though. For those of you that missed
Jonathan’s memorial, I’ve uploaded it to youtube for you to watch if you
want. It was a beautiful service. Here is the link: <a href="https://www.youtube.com/watch?v=JLWcbZRU8-g&feature=em-share_video_user">https://www.youtube.com/watch?v=JLWcbZRU8-g&feature=em-share_video_user</a>
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
Also, we are trying to make sure we have everyone’s emails
for Cancer Can’t so we can make sure you are getting updates on everything we
are doing now. Things are getting
busy! This is a great way to keep me
busy and possibly avoid my problems. But
the entire reason this program started was so Jonathan could feel good by
helping others. I’m going to follow his
example. So if you aren’t getting emails
from Cancer Can’t, Please sign up here: <a href="https://www.facebook.com/cancercant.info/app/100265896690345/">https://www.facebook.com/cancercant.info/app/100265896690345/</a> <o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.com8tag:blogger.com,1999:blog-1476216962773458117.post-58374328453983522642016-03-18T14:37:00.000-07:002016-03-18T14:37:25.659-07:00The Start of a new Beginning<div class="MsoNormal">
I know most of you are expecting to open the blog and read
about our family departing on our maiden voyage to Texas. Unfortunately, that is not the New Beginning
I’m about to share with you.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After I published my last blog, Jonathan took a drastic turn
for the worse. By Sunday evening he had
begun to start coughing up fluid. Pink
frothy fluid. No he didn’t have pink
juice or raspberries. The pink is an
indication that there is blood mixing with fluid in his lungs. We had his CT scheduled for Monday that the
Texas Dr. needed. However we actually
urgently needed as well. The CT showed
that Jonathan’s left lung was filling significantly with fluid. We overnight mailed the images to Texas and
scheduled Jonathan to have his lung drained the next day. On Tuesday they drained 1.5 liters of fluid
from Jonathan’s left lung. On Wednesday
we met with our oncologist to talk about Texas and what he thinks is happening
at this point. Unfortunately, our
conversation wasn’t a positive one, however it was what we were somewhat
expecting. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The color of the fluid indicates that the fluid is coming
from the cancer. The bloodier in color
it is, the more progressed the disease is.
As they drain the fluid, the cancer will most likely continue to grow
and just produce more fluid faster. He
felt in Jonathan’s current state, it would be unsafe to travel across the
country. We pushed him to tell us how
long he thought Jonathan has. His answer…
a few weeks. His advice was to make
Jonathan comfortable and that the risks of him traveling vs. the gain was not
worth it. After leaving that appointment
we called the Dr. in Texas to get another opinion. She said that she isn’t going to tell us we
can’t come. However she recommends that
we also just make Jonathan comfortable.
The consideration of Jonathan Dying in Texas, or possibly experiencing
something horrible while on the road in the middle of Wyoming didn’t seem like
a good idea. She said the tumor in his
hip has become absolutely massive. She
felt that the treatment would not even be effective in a tumor that size now
anyway. But If the fluid does not return
and Jonathan becomes more stable, she said to come down. She will keep his T-Cells frozen until she is
told otherwise. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So we did not load the RV on Thursday and we did not leave
for Houston this morning. I heard
Jonathan tell my dad that it looks like this is going to be the beginning of
the end. But we both know that for him
it is really the start to a new beginning, not an end. Jonathan has had the most amazing 6 months
that anyone could really ever have. When
we decided quality of life over chemo=quantity of life, we knew that most
likely this day would come. We went to
New York and had the time of our life. Field
seats to the Seahawks game. Jonathan had
a golfers dream trip to Pebble Beach and Cypress. He knocked off 2 more bucket list items in
Hawaii with our boys. Most people will
live through their 70’s and never experience what we did in the last 6
months. We have no regrets! We are not questioning the decisions we
made. We are at peace. Really the boys and I get the short end of
the straw. Jonathan got to have a great
6 months and then he gets to go hang with Jesus in an even better
paradise. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We are still very sad and have major worries and
concerns. How is this going to go? I do not want Jonathan to be in pain. How much of this do we expose our children
to? How in the world do I tell them that
their daddy has died? I’m going be alone
and without my best friend. There are
going to be about a million times that these boys are really just going to need
their dad. How could that not absolutely
break your heart. But we will be ok.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Jonathan had another X-Ray today. The fluid is already building again. He will be getting a permanent chest tube on
Monday we think. This will allow me to
drain fluid off his lungs daily to help him stay comfortable. We will most likely be entering into hospice
care by the middle to end of next week after we get that chest tube done. At this time, we are ok with some quick
scheduled visit if you feel like you were close with Jonathan and want to come
say hi. We just have one request, your visit
needs to be filled with laughter, not tears.
As he progresses, I think I will be asking for no guests and will want
to soak up the seconds we have left just the two of us. I think Nikki will be posting some more food
sign ups again soon if you feel like that would be a way to help. Thank you for praying for our family in this
difficult time. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
To add some laughter to this very difficult blog, I thought
I would share a story. Yesterday our
cousin Ryan and good friend Tyler drove over from the Tri-Cities to visit. The guys were teasing Jonathan about the
massive size of the tumor and that he was developing a figure comparative to
Beyonce. The conversation developed to a
point where Jonathan was actually up out of bed attempting to twerk. The laughter was exactly what we needed!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
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Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.com16tag:blogger.com,1999:blog-1476216962773458117.post-41684624079875062392016-03-13T18:22:00.003-07:002016-03-13T18:29:08.355-07:00The angry stage of greif<div class="MsoNormal">
I wanted to send out an update before we leave for Texas at
the end of this week. We have been very
busy the last couple weeks as Jonathan has been degrading rather quickly. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After his surgery, Jonathan was really struggling with
pain. We weren’t sleeping much and he
was in a constant very high level of pain.
Like really high. I felt like I
did after just having a baby. You know
that first night when you are exhausted but you just lay there and watch the
baby sleep because you are afraid you won’t hear them if they need you. Maybe even a little afraid they would just
stop breathing. Even if Jonathan did
fall asleep I don’t know that I was really falling asleep. Eventually after a few nights like this, we
went to the pain clinic again, both in tears, pleading for help. They took all the morphine out of the pump
and replaced it with a bupivacaine and morphine mixture. Bupivacaine is what they use in an epidural
for women when having babies. We were
learning that morphine does absolutely nothing for nerve pain, so we needed
something different. So we have been
going into the doctor almost every other day to try to get the dose figured out
for pain. I think we are very close. Finally, last week Jonathan was sleeping
pretty well and only waking up a couple times a night. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We talked to multiple doctors and some friends that have
been through this and decided to try to do some radiation for pain before we
leave. Jonathan’s type of cancer doesn’t
really respond to radiation for a curative treatment, however it is supposed to
help with pain. We now have to wait for
the wash out period on radiation so our Texas start date got pushed back. So for the last two weeks Jonathan has been
trying radiation. It was horrible for
him though. He can’t sit and he can’t
lay absolutely flat or without movement either.
When they created his body cast for radiation they had to vacuum suction
him to the CT table. He was screaming in
pain. He ended up stopping the doctors
and they had to try a few positions. We
gave him as much pain medication coupled with sedatives to try to get him
through each treatment. He did it and
made it through 5 radiation treatments.
Hopefully they start helping his pain soon. But for now, the pain pump is doing a pretty
good job compared to what his pain was at 2 weeks ago. Watching someone you love in that much pain
is absolutely horrible. <o:p></o:p><br />
<br />
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<br /></div>
<div class="MsoNormal">
For the last 2 weeks besides going to the doctor, and the
bathroom, Jonathan spends the remainder of his time in bed. He is trying to manage pain and his heart
rate. Every day his heart rate seems to
increase little by little. 3 weeks ago,
his resting pulse was around 80-90. When
he would get up and walk around it would be at 120. That is high, but not dangerous and we assume
probably from pain. Today as we lay in
bed watching tv, his resting heart rate is at 120. When he gets up to go to the restroom, it
hits 150. When he went down stairs to
get some coffee, his heart rate hit 170.
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We were able to find someone that is letting us use their RV
to drive Jonathan down to Houston. We
looked into flights, but he can’t sit for more than 5 minutes. Not long enough to take off and land. Most of the planes are not big enough to lie
down in and require you to sit, or they aren’t big enough to not need to gas up
a few times before reaching Houston. Jonathan
has almost lost the ability to make it up and down the stairs and getting to
the bathroom is tricky… We just thought allowing him to lay down and have easy
access to a rest room would be the best solution for him. We have his first doctor appointment on the
22<sup>nd</sup> in Houston so we are hitting the road first thing on Friday the
19<sup>th</sup>. My dad is coming with
us to help with the boys while we have to be at the hospital and will help
drive. We lucked out that my sister Mica
sold her home this month and while building their new home, happen to be
homeless. So we have someone to take
care of our place while we are gone. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This week we spoke with the doctors in Houston and hopefully
have more of a time frame. In the first
few patients of this trial, the trial results did not go well. They actually lost a couple patients. But the last couple patients they had,
everything went very well and they had little side effects, the T-Cells results
did what they were hoping for and the patients were allowed to go home after 2
weeks. We don’t know yet if it
ultimately worked but you know… So we
are hoping to only be in Texas for 2 to 3 weeks. But we know some times things don’t always go
as planned so we have signed a 1 month lease at the apartment across the street
from the hospital. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Jonathan and I are both really looking forward to going to
Texas. We sort of feel like this is our
opportunity to run away and just be us.
I have been feeling angry lately and have sort of been withdrawing from
people. I’m easily irritated by things
people say, and I don’t want to snap at people, so I just want to be left
alone. I know anger is part of grief,
and I think with cancer, the grief process is long and drawn out. Over the last month I think I have already
started to grieve the loss of my husband.
Some of you may judge me for saying that because I haven’t lost my
husband. But day by day I’m slowly
losing him. My Jonathan is a dad that
likes to play with his kids, take them golfing, wrestle with them on the
floor. Now he can only read them books
in bed. My husband helped me in every
way he could, we were a team. Now I care
for him and our once wonderful marriage is still full of love, but is so much
different than it used to be. He and I
have both lost, and just keeping losing pieces every day. So yeah, I’m getting angry… <o:p></o:p><br />
<br />
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<br /></div>
<div class="MsoNormal">
The last few days Jonathan has yet another new symptom. When he breathes he has a crackle sound
coming from his throat. Almost like the sound
of pop rocks candy. When you listen to
his lungs, they sound clear but when you read about that symptom there are a
couple possible options. The first being
pneumonia. Jonathan has for the most
part of the last month been laying on his back in bed. So that isn’t out of the realm of
possibility. The other more serious option is pulmonary edema. Fluid buildup in the lungs. There are lots of things that can cause
this. Trauma to the lungs… like maybe
tumors on the lungs possibly. A pulmonary
embolism, but he isn’t having chest pain or shortness of breath. I was wondering if it might be cardiomyopathy. This can be from a faster heart beat… which
he does have and seemingly getting worse.
Ultimately we all know fluid buildup is not a good sign. After we get his CT tomorrow we will have the
doctor look at it and see if I have some valid suspicions or not. Jonathan is starting to get some anxiety over
this and seems to be weighing himself more frequently when he gets up to use
the restroom. He has gained a few pounds
over the last few days, but then again so have I! </div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Last week Jonathan and I met with a couple people from
hospice. We are trying to learn what
they do, and what help they can offer.
We are 30 so we ultimately know nothing about hospice! So to fill you in, Jonathan does qualify for
hospice but he would have to be deciding to stop any form of treatment. They are ultimately comfort care that would
allow him to be home and not having to go to the ER for stupid things like pop
rock sounds. They do offer a palliative
care option through Horizon Hospice, which would be helpful. We have started working with the palliative
care team, and are getting lots of answers to questions about actual
hospice. We had a very tear filled night
as they left a green form for us to fill out.
It was a DNR type form that we are to place on our frig. You can only imagine our conversation… If you
are found unconscious, not breathing and without a pulse, are we to attempt
CPR? Then the questions get so much more
detailed… ultimately it’s like deciding how you want to die. It is horrible, and Jonathan doesn’t seem to
want to decide. How could he? I was so grateful that the hospice people
told me I need to bring all my legal paperwork with me to Texas. So as
I was organizing that, I found our medical directive that Jonathan and I
updated upon his diagnoses 2 years ago.
He answered these questions thoughtfully and not emotionally. So I brought these to him and asked him if we
should go by that document. He agreed. I was grateful to have that because I know
right now, we are very emotional about this.
For those of you out there that do not have your paperwork in order for
something horrible like this, I’m telling you this was a gift to have. For me I know I want need to question myself
and what Jonathan would want and to know we made a sound choice not an
emotional one. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
So today I’m going to work on packing clothes and getting to
the grocery store and get things ready to load into the RV. I did want to share a little thing someone
shared with me this week. It is from a
devotional where Paul shared about how everything that had happened to him, helped
allow him to share the news of Christ.
Our scars and storms (And man do I feel like we are in a hurricane right
now) are part of our story that brings us where we are today. I ultimately want our story to help reflect
the love of Christ. Oh and I REALLY want
it to reflect the healing power of Christ.
But I understand that might not mean Jonathan’s healings. But our story may be what someone needs to
hear. That is why I have been so open
about this entire journey. If there is
any point to this at all, I pray that maybe we can help someone else. Or more truthfully allow them to let God help
them… even if they are angry.<o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.com8tag:blogger.com,1999:blog-1476216962773458117.post-87411044348736591252016-02-25T20:57:00.001-08:002016-02-25T20:57:18.098-08:00Things can change so fast!<div class="MsoNormal">
I know I just posted a blog, but I’m getting lots of texts
and questions about what is going on as word is spreading that things are not
going well. So I thought I would fill
you all in. This is the easiest way for
me so my phone isn’t blowing up and I’m not spending hours on the phone.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So as I mentioned in my last blog, Jonathan is loosing
feeling in his left leg all the way down to his foot. At first it was when he was sitting in
different positions, now it is progressing to where his foot is hurting or
getting the pins and needles feeling all the time. Shocker, I started researching! So on Monday night as we were lying in bed
watching TV, I decided to take his femoral pulse. (That’s the most action Jon gets
anymore…) It was super easy to find it on
the right groin. The left groin where
the tumor is, I could feel nothing but tumor.
So I started to get concerned that he was losing blood flow to his limb
and that artery may be getting blocked by the tumor. I called the doctor first thing Tuesday morning
to get him scheduled for a scan before he went in for surgery to get the pain
pump in. I was unsuccessful! They ended up getting the scan done after his
surgery first thing on Wednesday morning.
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I went right down to the imaging place and got the CD of
images. Later that day we met with a
doctor friend at the house to look at the images together. Jonathan has an additional 6 or 7 spots on
his lungs that are small, but new. His
hip, where he is getting most of the pain, has changed significantly. His tumor has now wrapped around the hip bone
and goes from the outside of his left hip all the way to past the center of his
pelvis. It is starting to work up to the
lower back and is now half way down his left femur. The tumor has begun pushing on his large
intestine as well as shifting his bladder.
As you can imagine this is causing problems. I called Dr Howlett to get his opinion of the
scan. Fortunately I was wrong and the
tumor is not yet crushing his artery. If
that was the case we would have to choose to amputate his leg, or let him die
from a blood clot or gang green. So for
now that isn’t happening. It is however
crushing his sciatic nerve. So he felt
at this time it is still safe to not surgically do anything.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I thought I would show a few images of the CT of the tumor
in his hip. I made some notes on the
images to explain. As you can see they
didn’t even get the entire tumor in the scan… <o:p></o:p><br />
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<div class="MsoNormal">
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<br /></div>
<div class="MsoNormal">
Here are questions we are getting:<o:p></o:p></div>
<div class="MsoNormal">
Can you cut out a portion of the tumor that is causing
problems? It is not recommended. It is called seeding the tumor. Once you cut into the tumor the cancer cells
are disrupted and spread everywhere.
Often times the incision won’t heal and becomes cancerous. This obviously causes a ton of its own
problems. Not to mention the metastatic
disease can explode and your time is shortened.<o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
Chemo? Jonathan doesn’t want to do chemo! And it will disqualify us from the trial in
Houston.<o:p></o:p></div>
<div class="MsoNormal">
Radiation? We are
looking into palliative radiation options.
We are also trying to figure out if it will disqualify us from the Houston
trial as well. BUT radiation will
hopefully provide temporary pain relief although it is not a curative method
for Jonathan’s type of cancer. So we are
meeting with a radiology Oncologist tomorrow to prepare to begin
treatment. It is a process to get radiation
with body casting, placement etc. So we
will start the process in hopes that coming home from Houston we will have most
of the hoops jumped already. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
The Pain Pump? Well
we went into the doctor early this morning as Jonathan did not sleep more than
2 hours last night. Lying down is so
painful for him. So about every 20
minutes he was getting out of bed just to hold onto the wall and stand. Now imagine you just had surgery on your abdomen
and you can’t lay down. Yeah… that is
what we are dealing with here. So Dr.
Jamison increased his morphine pump by 70%.
She said it is making the hair on her neck stand up but she could see
the amount of pain he was in. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
Houston? We spoke
with Dr. Wang yesterday. They will be
ready for Jonathan on March 14<sup>th</sup>.
He has to have a 2 week wash out of his immunotherapy drugs. So we are getting those today, and then will
be mailing Jonathan’s scans to Texas.
Once they determine it is still safe for Jonathan to do the trial, we
will book our flight. Jonathan, I and
the boys will fly down. My dad will be taking
the truck 4 days before we leave and he will drive down and meet us. I’m working on finding housing close to the
hospital. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
Jonathan and I feel it is important for us to do everything
we can to get to Houston. He feel it is
our only shot at actually saving his life at this point. We do also know that they have lost patients
while on this trial. So as he is getting
worse for wear, we assume our risk is rising every day. So this is our long shot… <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
I was talking to Jonathan’s sister last night as we were
talking about where we are at. She
decided to establish some rules for us.
I’m having a hard time telling people no and laying some ground rules. I just know everyone loves Jonathan and wants
to see him, however as I wrote in my last blog, I watch him fake it. He also doesn’t tell people no or let them
see how he is really doing. So as we prepare
to leave in 2 weeks and know full well I may only be bringing 2 little boys
home with me. We would love to see you,
but I really appreciate Kristine protecting us by establishing a plan for how
this need to go. Here is what Kristine
would like me to have everyone know. <o:p></o:p></div>
<div class="MsoNormal">
-We are no longer going to be able to go out. Jonathan is just not well enough for that.<br />
-No more overnight house guests… not even family. This will allow us to put our kids to bed and
have time alone. Jonathan also won’t
feel like he needs to wake up and have coffee/breakfast with guests.<br />
-Visitors need to limit their stays to an hour and a half. <br />
-Everyone needs to leave by 7pm. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
To add insult to injury as we were leaving the doctor today
the nurse was taking more labs because his original labs showed an enzyme
called alkaline phosphatase. This is an
enzyme that can indicate a few possible things, but as I read about each scenario I think that it is indicating bone metastasis. It ultimately is something that happens in
late stage cancer patients and of course is extremely painful. If you have the desire, google Bone Metastasis
Bisphosphonates. You’ll have a
wonderfully terrifying read. We are hoping to have more lab results back on this tomorrow.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
I don’t know what else to say except we need prayers. I want to say thank you to our friends that
have showed up to help the kids have a fun day as we try to protect them from
our tears. Thank you to those of you who
are going to pick up the pieces of Cancer Can’t so our hard work and desire to
make a difference will not be in vein.
Pray for us that we may have the insight on how you explain this to a 4
and 5 year old. Pray for Jonathan and I
as we begin to talk about scenarios, his wishes and that I will have the
courage to do what he needs me to do. <o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.com20tag:blogger.com,1999:blog-1476216962773458117.post-69935176321686819522016-02-21T17:01:00.000-08:002016-02-21T17:01:20.380-08:00What He Doesn't Let You See<div class="MsoNormal">
Last Thursday as I was leaving the senate hearing, I was
walking out with Representative Kevin Parker.
I was there to testify on our Cancer Can’t Charitable Pharmacy bill with
Jonathan, the only problem was that Jonathan was in so much pain that he was
getting nauseous and was feeling like he may pass out. Or he had taken so much pain medicine that he
was getting those symptoms… Either way, he sat in the truck while I went into
the senate hearing alone. Kevin was
reassuring me that I did a good job, because he knew I was a bit nervous. Jonathan and I planned our testimony together
and I simply just had to wing it! As I
was leaving Kevin said to me, “You know Jonathan never really gives me any
signs that he is in pain or that he doesn’t feel well.” <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As we were driving home that day I started to think about
what Kevin said. My aunt once told me
the same thing. They came to visit and
upon leaving Jon says, “I think we need to go to the ER.” But my aunt and uncle had no idea he was that
sick… he just tries so hard to be the normal Jonathan we all know and
love. I sometimes get frustrated with
him because he doesn’t tell people the truth about how he is feeling. A couple weeks ago he had a breakfast date
with a friend. He felt absolutely
awful. He didn’t cancel though, he got
out of bed just in time to make it there and then got right back in bed as soon
as he got home. I’m certain he joked and
smiled as if he was just feeling peachy!
But I understand why he does it.
When he was very first diagnosed every time we saw someone they gave us
the puppy dog look and the pity conversation ensued. Jonathan often would just rudely walk away. It wasn’t him. He didn’t want pity and he certainly didn’t
want people to treat him any differently.
Jonathan jokes, he laughs, he serves others, he is active and works
hard. That’s who he is, and who he wants
to be… Not that sick guy with cancer.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It is so hard to sit and watch him in pain. I feel so helpless and we’ve had our own
screaming match about me treating him like a patient. This role of being his wife and caretaker
isn’t easy. He wants his wife, and for
me to treat him as I always did. I think
he gets frustrated that he even needs a caretaker and has to even ask for
help. I watched Jonathan’s mom in the
midst of this exact struggle this week when we stayed with her. She could tell he wasn’t feeling well, and
she wants to help. But really what can
she do? So as we sat to watch a movie,
she would ask “Do you want a blanket, do you need some water, can I get you a
snack, I will make you some tea…” I
think her next offer was to massage his feet and trim his nails! I finally laughed and teased her about
it. But I know how she feels. It was just interesting for me to sit and watch
it from a different perspective… Every time she said something it was just a
reminder he wasn’t feeling well. She was
sweet and helpful before cancer, but not quite like this. If he can forget for 5 minutes that he has
cancer, he doesn’t want someone else to remind him! He doesn’t want to be treated different. So he puts on a happy face and doesn’t let
anyone know how he really is feeling.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Prime example: Kevin
texted him as we were driving home to check on him. He was sleeping most of the trip in the back
seat trying to fight through the pain.
But when Kevin texted, this was the picture he sent back! <o:p></o:p></div>
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So the truth, Jonathan feels awful. The pain is becoming unbearable and he is
starting to hide out at home so he doesn’t have to lie about how he is
feeling. It is becoming harder each day
to pretend. We were supposed to be on a
plane to Vegas today with Scott and Heidi for another bucket list item. (He wants to drive an exotic car) But we didn’t feel like he would be able to
sit in an air plane… So Scott and Heidi boarded the plane today without
us! We moved up surgery to Tuesday for
Jonathan to have his pain pump put in on that morning. He just can’t take it anymore. This is what our mornings consist of
now. He didn’t know I snapped a photo,
but he can’t sit because it hurts too bad.
So he Stands to eat at times and tries to fight through the pain.</div>
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<br /></div>
<div class="MsoNormal">
<o:p></o:p></div>
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<div class="MsoNormal">
He is starting to get bouts of nausea randomly through the
day. We aren’t sure why because he has
never had a problem with pain pills before.
His heart rate is slowly rising. He has lost feeling in his left foot. Yesterday Jonathan had to walk away from the
breakfast table because he was beginning to get a bit emotional. He is just so tired of feeling sick. I know his mind is probably where mine
is. That tumor is growing… Is there
another reason why he is feeling nauseous?
Where else is it spreading to?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We are really hoping that this pain pump will help with his
pain and we can get back to a little bit of normal life. On Thursday he has his next infusion probably
right after we leave the hospital. We
will schedule his next scan at that time.
I would guess it will be in the next 3 weeks. That will have given the Dr. in Houston 6
weeks to grow the next infusion we will try.
We can still hope that this current treatment is working, however we are
pretty certain it isn’t. We can see the
tumor growing in his hip, and Jonathan is starting to get chest pain around his
sternum. So at this point we really are
praying that the tumor burden hasn’t spread so much that we can’t get into the Houston
trial now. If we happen to get good scan
results, we would be very pleasantly surprised.
<o:p></o:p></div>
<div class="MsoNormal">
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<br />
<div class="MsoNormal">
Please pray that this pain pump works effectively for
Jonathan. I’ve been having random bouts
of crying when I hear a certain song, or when I’m driving by myself. I guess it just feels like things are getting
worse. BUT we are not giving up. We are still praying for our miracle and
trying to enjoy the minutes we have. We
would just like to have quality minutes back.
Minutes with the Jonathan that isn’t in constant pain. Thank you all for your thoughts and
prayers. We really appreciate it. <o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.com6tag:blogger.com,1999:blog-1476216962773458117.post-56142553429990184092016-02-04T21:21:00.000-08:002016-02-04T21:21:51.577-08:00Painful<div class="MsoNormal">
Jonathan and I are at the doctor’s office today. It is time for another infusion. So I decided to bring my computer and as I
sit here I thought I would give you all an update on how things have been
going. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Painful! I think for
my last blog I told everyone that Jonathan’s tumor was bigger, however I didn’t
really explain what bigger meant. Before
we started on this trial drug the tumor in his hip was 5 centimeters in
diameter. That is about the same size as
a plum. In the last scan, the tumor was
measuring at 10 cm, which is about as big as 4”. Just before leaving to Hawaii Jonathan was
beginning to need stronger pain meds than just what he could get over the
counter. He was losing range of motion
in that leg to the point that he can no longer put on shoes or socks. So I’m now helping him get dressed every
day. It has become very hard to watch
the amount of pain he is in on a daily basis.
He cannot go to sleep because he hurts too bad, so I try to stay up with
him and watch tv. He tosses and turns
all night and when I left for the gym yesterday he was lying face down on the
bed trying to fight through the pain until the next oxy kicked in. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We sort of have been arguing about this lately. I don’t know why he thinks he needs to be
such a “guy” about the pain. He
obviously is not taking enough pain meds to properly manage the pain, but he
just hates taking pills. I don’t know if
he thinks he is afraid to get addicted or what?
I say if we come out the other side of this and he is alive but addicted
to oxy, that would be a wonderful problem to have and I would welcome it with
open arms! So today I asked the doctor
about information on a pain pump. We
went over what Jonathan is taking and how ineffective it is. We now have an appointment with a pain
specialist and most likely Jonathan will have a minor surgery to be getting a
permanent pain pump put in. The sooner
the better! We need sleep! <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We also got word after his blood draw that Jonathan’s thyroid
is beginning to elevate. He has been
really tired but he also can’t sleep. So
he will start taking medication for his thyroid now as well. This is a known side effect that can happen
from the Keytruda. He told me today once
his thyroid gets figured out, his hair will grow back and his libido will hit a
whole new level… so I better watch out!
We also are having trouble getting this other medication added to the
keytruda regimen. Our insurance has to
apparently deny the claim in a certain way that would allow a grant to pick up
the cost. Our insurance isn’t doing
that… and to order the drug it is over $100,000 per treatment. Not in our budget. But we will get it sorted out. Hopefully soon!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Last night I was sort of doing my own medical exam of his
tumor… I’m weird, but that is old news!
I just want to know how everything looks and what changes I notice so I
can be on top of it. His left butt cheek
is now significantly bigger than the right and I’m guessing we have way
exceeded 10 cm in size. I can feel the
tumor from about 2” below his hip bone all the way down to about 2” below his
butt cheek. It has also now spread to
his groin area on the front. I’m
starting to wonder at what point this tumor is going to cause his entire hip to
dislocate! <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We have been communicating with Dr. Wang out of Houston and
have begun the process to get into that trial.
Jonathan had a significant amount of blood drawn on Monday which we
overnighted to Houston for them to begin growing the virus cells. (I’ll explain the process the best I
can) Jonathan has had the chicken pox as
a kid. So his body already has a
“t-cell” antibody that will recognize chickenpox and fight it off. This trial will take that cell, and then
train it to recognize the cancer and attack it as if it were chickenpox. This process of growing/training these cells
takes about 6 to 8 weeks to do. So in
about 2 more infusions we will scan again.
Depending on the results, we will pick up and move to Houston, or Dr.
Wang has agreed to freeze the cells if we decide to continue on this current
path with Keytruda. I think Jonathan and
I are preparing ourselves that we will be in Texas by April.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We are also preparing the kids the best we can, but they
don’t want to go. I don’t think they
understand it is temporary. Jude tells
me every day that he really loves our house.
Then he asks me if I love our house too. He asks a lot of questions
actually… at breakfast he asked if I would hold his hand. So I did.
Then he said to me, “Mom if I hold your hand and you die, does that mean
I can go to heaven with you?” He asks
lots of questions about heaven… we have assured him you can have as much candy as
you want there and that there are no sugar bugs in heaven so you don’t have to
brush your teeth. I remember when Jax
was at this age though. When Jonathan
was very first diagnosed with cancer, Jax was 4. He asked us to read the story of the crucifixion
every night for a month. These poor
boys… we try so hard to have a normal home life for them. However, I doubt many other 4 year olds are
so obsessed with questions about heaven and dying. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On a completely
separate note, we are staying very busy with Cancer Can’t. We have set a date for this year’s golf
tourn, dinner and auction. The WSU
football schedule came out and the game is out of town on September 10<sup>th</sup>. So mark that day on your calendars! Our “Cancer Can’t Charitable Pharmacy Act” is
working its way through Olympia. Things
are looking really positive so far. We
know anything can go sideways at any moment, but we will hopefully know by
beginning of March if our bill has passed.
We can then begin planning on implementation of this new program. Our board is working on developing programs to
serve oncology patients in the Inland Northwest and I feel like I’m having
meetings of some form every other day.
We are trying to be very thoughtful about what we are doing and that the
money we spend will make a great impact.
From the day Jonathan and I decided to start Cancer Can’t we began
praying that what we would do would serve both God and others. I often say how shocked I am at the support
we are getting for Cancer Can’t.
However, It is very clear to Jonathan and I that God has showed up
here. He is driving this car, we seem to
just be adding the gas here and there.
With that being said, I was contacted by the American Cancer Society
today to let us know they were throwing all of their resources at our bill and
it has been approved in their budget to get this bill passed. We then spoke to their lobbying attorney and
I’m meeting for coffee next week with a manager from the American Cancer Society
Action Network. It is really awesome to
get this level of support from such a big organization. <o:p></o:p></div>
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<br />
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Every morning at breakfast Jonathan does a verse of the day
with the boys. Jonathan reads the verse,
then asks the boys what they think it means.
Often Jax says “I have no idea!” We go on to explain what we think the
verse means and then we talk about how we could follow the verse that day. It really is great breakfast conversation
with the boys. Today’s conversation was
meant to happen. Philippians 4:6 “Do not
be anxious about anything, but in every situation by prayer and petition, with
thanksgiving, present your requests to God.
And the peace of God, which transcends all understanding, will guard
your hearts and your minds in Christ Jesus.”
I think our anxiety is a little different than the boy’s, but our
instruction is the same. <o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.com0tag:blogger.com,1999:blog-1476216962773458117.post-86032131559458543652016-01-13T16:37:00.003-08:002016-01-13T17:22:39.449-08:00No Tears today!Yesterday was rough! Jonathan and I each had a few break downs with bouts of nervous tears. We have had a lot going on in the last couple of days. There is the obvious scan, life and death type stuff, but also a bunch of doctor drama with horrible things happening to dr. Raj. We have been so busy enjoying our minutes and pretending like we have a wonderful life, we just aren't prepared to be told to call hospice. We just lost a friend in the matter of 3 weeks after being told he had a bad scan and he should make that call. BUT I think the reality is, we are never going to be ready for that news. There will never be enough quality of life! Ever.<br />
<br />
Yesterday I reached out to our attorney after an article was published about our beloved Dr. Raj. In my last post I told you I felt like something fishy was going on. I knew more and still know more than I'm comfortable publically sharing, but as a patient Jonathan and I are very very unhappy about what has happened here. At our last infusion Jonathan and I were told that Raj just resigned and left. We know Raj well enough to know he would never do that to us. Well at least not without talking to us about it and explaining circumstances and ensuring our care and information was being handled properly. <br />
<br />
On Monday night I had a friend contact me and send me a spokesman review article. This article basically stated that Raj lied about passing his boards and forged documents stating such. It has an interview of his employer and owner of the practice sharing all the details of the report he had filed with the medical commission. Now I understand that IF in fact Dr. Raj had lied and forged documents, that would be something an employer would and should report to the medical commission. BUT there are some major problems here for us as patients. Jonathan and I as you know do our due diligence. We went and actually found the case at the Washington State health department website filed against Dr. Raj. This document states the Raj was hired in 2013. At that time Dr. Raj verbally claimed he had passed his boards. In 2014 he was asked to provide documentation of such, he then provided a forged document because he again failed his boards for a second time in 2014. He also provided a forged philosophy degree from Rutgers. So Jonathan and I of course just went looking further online to see if Raj did in fact pass his boards. It took less than 5 minutes for us to find this information online. Dr. Raj passed his internal medicine boards in 2010 and his medical oncology boards in 2015.<br />
<br />
Now here are some red flags we have with this entire situation. We may know more about this situation than the average joe as Jonathan's job was to provide loans to people. He specialized in physician loans and often read physician contracts. It is rare for a doctor coming out of med school to have passed their boards. It is typically written into a contract with a time frame. He said normally it is 3 years. Sometimes 7 years. AND as we understand, you legally don't even have to pass your boards to practice. You just can't claim to be board certified and I'm assuming that makes a difference in a physicians pay. So it seems fishy to us that Raj would even need to have to lie in 2013 that he passed his boards. No practice would expect a dr. right out of med school to have passed those already. Next about a forged document, why would a employer ask an employee for this document or just rely on their word without calling the state to verify? It took us less than 5 minutes to find in state records when he passed his test. Red Flag. This is just my opinion but this doesn't seem plausible. But maybe I'm missing facts about this process? Lastly why would he need to lie about a philosophy degree? That isn't even related to his medical degree.<br />
<br />
Nevertheless, now there is this news article out there that many of Raj's patients are getting tagged on through social media. Saying "hey isn't this your Doctor?" As if being in the middle of a cancer battle isn't stress enough? Now we have people all over our town gossiping about if we were getting proper care without even knowing our doctor or the entire story by doing their due diligence. It is hurtful and adding extra stress. Which raises the question how did the Spokaneman even know about this? To find this report on the health department website we had to actually type in Raj's full name. So are you telling me staff at the spokesman are typing in every doctors name in our area? No Way! Someone gave them that report! Then the owner of the practice proceeded to comment telling all the details about what he turned Raj in for. As a patient of his practice, we feel he should have said Raj is a good doctor and all of his patients were in good care and beyond that, I have no comment. Instead he is causing patient panic by making them think they had an unqualified doctor who is a liar and didn't pass proper tests. No offense but less educated people out there may jump to a conclusion that a doctor not board certified is unfit to practice completely unaware that it is common for doctors to not pass boards 1, 2 and 3 tries around. AND that you don't even legally need to pass boards to practice. It is leading the public to believe something horrible happened when in fact the mistake made here would be only a lie that put no one in danger. He made a mistake and the commission will take appropriate action. But he still gave amazing care. <br />
<br />
Now we are patients feeling like we are out in the wind without a doctor days before we have the biggest scan of our lives. Raj was not given the opportunity to transition his patients and new doctors were not given the opportunity to get fully briefed on each case. Shoot as Jonathan went in for the scan, he had to stop the nurse to ask if his kidneys were at a safe level to handle the dye. No doctor had looked at his labs, so the scan was delayed as the nurse found a practitioner to check the lab results. This wouldn't have happened had we had a doctor closely monitoring our care! So on Tuesday Jonathan changed his appointment to a doctor we researched and knew was better equipped to handle Jonathan's case. So long story short (or long) this Dr. Raj thing is really messed up. I want to believe he didn't lie, I just don't think he would. He is a good person. But I also know people make mistakes, and even IF he did, this has been handled entirely inappropriately. I mean these are peoples lives, and yes we are upset about it!<br />
<br />
So, the new doctor. Actually we feel very confident in our new doctor. We had actually researched him when jonathan was first diagnosed 2 years ago. At the time he had a practice in post falls and is known for his sarcoma research. We did not go to him then because we felt that we wanted to get chemo in Spokane, and this doctor did not have privileges at Sacred Heart. Because we had great doctors in Seattle we could work with doctors in Spokane and all work together. Medical Oncology Associates has since purchased Doctor Samuals practice our of Post Falls. So now we will be traveling to post Falls to see this doctor. If there is an emergency and we land in the Spokane hospital we will simply have to be in the care of a hospitalist and personally work with dr. samuals over the phone I guess. <br />
<br />
We did see Doctor Samuals today and felt very comfortable with him. He was very knowledgeable about Jonathan's type of cancer and the complexity of the trial drugs. He even had our plan C ready. So here is how the scans went... <br />
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<div class="yiv9631571343p1" id="yui_3_16_0_1_1452645547673_15427">
<span class="yiv9631571343s1" id="yui_3_16_0_1_1452645547673_15426">Reading scans with immunotherapy is very complicated. The imaging technology has not caught up with the treatment.<span class="yiv9631571343Apple-converted-space"> </span>Typically with chemo if a tumor has grown it would indicate that treatment isn't working.<span class="yiv9631571343Apple-converted-space"> </span>With immune therapy, especially in the first few scans growth can be good or bad. It can mean it isn't working or it can mean it is filling with immune type cells causing swelling and is working. <span class="yiv9631571343Apple-converted-space"> </span></span></div>
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<span class="yiv9631571343s1"><span class="yiv9631571343Apple-converted-space"></span></span> </div>
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<div class="yiv9631571343p1" id="yui_3_16_0_1_1452645547673_15434">
<span class="yiv9631571343s1"><span class="yiv9631571343Apple-converted-space"><span class="yiv9631571343s1" id="yui_3_16_0_1_1452645547673_15433">We were expecting to see growth in his hip and in fact there is growth.<span class="yiv9631571343Apple-converted-space"> Dr. Samuals</span> feels like he is also seeing some death within the tumor.<span class="yiv9631571343Apple-converted-space"> </span>He said there is one new spot on Jonathan's lung and now a lymph in his abdomen showing growth. </span><span class="yiv9631571343s1" id="yui_3_16_0_1_1452645547673_15453">This is tricky because the new spot on his lung could have already been there but too small to see on a scan.<span class="yiv9631571343Apple-converted-space"> </span>Now that it might be "swelling" it is visible on a scan.<span class="yiv9631571343Apple-converted-space"> </span>Or it could just be new!<span class="yiv9631571343Apple-converted-space"> </span>Typically osteosarcoma does not spread to lymph so it could be something that isn't cancer, or it could be. <span class="yiv9631571343Apple-converted-space" id="yui_3_16_0_1_1452645547673_15465"> </span></span></span></span></div>
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<span class="yiv9631571343s1" id="yui_3_16_0_1_1452645547673_15467">We personally feel like these are positive scan results.<span class="yiv9631571343Apple-converted-space"> </span>We know that in 1 month from July to August he went from no mets on his lungs to 6 spots.<span class="yiv9631571343Apple-converted-space"> </span>He has now gone 4 months with new 1 spot.<span class="yiv9631571343Apple-converted-space"> </span>We know this is fast growing so to see this result we would like to think this means a stable scan at the very least. <span class="yiv9631571343Apple-converted-space"> </span></span></div>
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<span class="yiv9631571343s1" id="yui_3_16_0_1_1452645547673_15487">This new doctor said they are seeing positive results in adding another immune therapy drug to the Keytruda.<span class="yiv9631571343Apple-converted-space" id="yui_3_16_0_1_1452645547673_15488"> </span>So we are applying for another compassionate use and will hopefully be adding another immunotherapy drug in conjunction with Keytruda.<span class="yiv9631571343Apple-converted-space"> </span>We have already spoke to Dr. Wang at Baylor and she feels like we should stay the course and feels that adding this other immunotherapy drug is a good idea. There is one bad thing... She said her trial will most likely be closed in a few months as the final spots are filling up. So, now that we aren't joining the trial, it may not be there as a plan B if our next scan is bad. But it might be. </span></div>
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<span class="yiv9631571343s1">So to conclude, there have been no tears today. I did set the garbage can at me feet during the appointment just incase. But I made it through without throwing up. I can not tell you how incredibly hard this is on those scan days. So now we can go back to pretending we have a wonderful life until the next scan 3 months from now! I can not thank you enough for all the prayers. Jax's teacher asked me the other day how I was even up right... I told her God just gives us enough grace each day. I feel that is because of all of you praying. </span></div>
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<span class="yiv9631571343s1">I had someone post this on my wall over a year ago. But after this week we've had I've thought this many times. Jonathan and I even both admitted we had thoughts that we sort of hoped the plane would crash on the way home. At least we would all be together. This is absolutely no fun, and God is pushing me to my limit, we will just leave it at that!</span></div>
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Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.com4tag:blogger.com,1999:blog-1476216962773458117.post-17859487402041712682016-01-11T00:31:00.001-08:002016-01-11T00:31:38.434-08:00Back To Reality...<div class="MsoNormal">
Tonight I am writing this blog as I sit on the airplane on
our way home from Kauai. Jude told us he
wanted to go to Hawaii for his 4<sup>th</sup> birthday, Jonathan and I had no
objections. Considering what was to lay
ahead of us, we wanted to have some fun with our entire family. We did have an amazing trip! But I’m sick to my stomach that I now am
headed home back to real life.<br />
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In the last 9 months I feel so grateful that we were able to
have 6 really wonderful months with the boys.
We did have a really horrible 3 months in the middle, but quality of
life is a very real thing. Today I do
not regret our decision to stop chemo and try something different. Jonathan and our family are successfully
making the very best of every minute we are given. I’m so grateful that we have been blessed
with the ability to do this. There have
been some wonderful people in our life that have assisted us in fulfilling bucket
list items, or just giving us needed encouragement. We are experiencing the definition of quality
life.<o:p></o:p></div>
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Before we left for Hawaii, we had a good and bad
Christmas. We have had a great time in
the snow with our boys and got to see a wonderful white Christmas that we spent
with our entire family. But I heard my
niece tell me a quote as she was joking about selecting colleges. “Fake it ‘til you make it!” she said. I totally know what she means. Jonathan and I had had a very sad week
leading up to Christmas, and truth be told, we were sort of faking it through
Christmas… We had a couple hard hits
just before Christmas, and today as we come home to reality, the hits keep
coming.<o:p></o:p></div>
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About a week before Christmas we got a call from our new
friends, the Davis family. Ryan is a few
years older than Jonathan and has been fighting osteosarcoma for almost 4
years. We instantly connected with them
as friends as we finally met someone that so deeply knew what we were going
through. They were an amazing family
with amazing hope and love for God. They
told us just before Christmas that Ryan’s last scans were very bad. They had been told to call hospice. By Christmas day they had drained 10 liters
of fluid from his abdomen in a 5 day time.
Today as Jonathan and I boarded our plane to come home we got word that
Ryan no longer was in pain and has gone home to be with our heavenly
father. He has an incredible wife, and 3
children. I am heartbroken for their
family, and I cannot tell you how hard this is for Jonathan and I. We fear this is a glimpse into our
future. (If you could please say an
extra prayer for the Davis family tonight)
He had 1 month from his very bad scan…<o:p></o:p></div>
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We also have been struggling with other bad news. 3 days before Christmas I got a text from a
fellow cancer patient’s father. “Did you
hear Dr. Raj just quit?” Yep that’s
right, Jonathan’s oncologist for the last 2 years is no longer our doctor. With that being said I know he wouldn’t just
quit without talking to us. Something is
up, but nevertheless, we are going to have to figure out this hurdle. To be honest, this is also really bothering
me. Dr. Raj is more than just our
dr. He has become a friend. He knows our kids, he really knows us, and he
cares about Jonathan. I know there are
other doctors, but right now as we enter this hard stage, I feel alone without
Dr. Raj on our team. <o:p></o:p></div>
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So after a wonderful Christmas Eve, and a wonderful
Christmas day, I put my 3 boys to bed and I went back out into the living
room. Then I had a little break down, as
I sat with my dad and just cried. I don’t
want to do this anymore. I had a feeling
Ryan would not be with us when we got home.
Hearing about everything they were experiencing is terrifying. I knew we had this wonderful trip planned to
Hawaii with our family, but the day after we come home Jonathan is getting
scanned again. I always feel sick around
scan time… and oh, we don’t know who our doctor is that is going to tell us the
most important info in our life! We do
know that the Drs in Houston have all of Jonathan’s test results. If his scans are not good, we will be sending
the scans to Houston for them to review and hopefully accept Jonathan as a
candidate for their trial drug. If his
tumor burden is too high, or in a place that a side effect such as swelling would
cause a fatality, they will not accept him into the study. At this point, we have no plan C.<o:p></o:p></div>
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I will post again after we have time to digest Jonathan’s
scan results and potentially have a plan. Please pray with us for positive news that
this trial drug is working. It has been
wonderful so far, and Jonathan has only just began to experience side effects
this last round. They were similar to
food poisoning and only lasted 2 days.
That is doable compared to chemo… and he has only had that once in 3
months! <o:p></o:p></div>
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I will leave you with 2 significant pictures from our
vacation! Two of Jonathan's bucket list items were marked off on our trip. The first, take a helicopter ride with our boys. The second, swim in a waterfall with the boys. Thank you for your prayers over the coming days. We really do appreciate it!<o:p></o:p></div>
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Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.com5tag:blogger.com,1999:blog-1476216962773458117.post-70981270252620914302015-12-01T23:45:00.004-08:002015-12-02T10:29:20.545-08:00Ignorance is Bliss<div class="MsoNormal">
I haven’t been writing blogs as frequently the last couple
months. Things have really been going so
well that I haven’t wanted to sit down to write. Life almost feels normal again. Jonathan almost feels normal! The kid’s behavior feels normal… Or at least
we aren’t praying about cancer every night.
They are back to praying about normal things like nightmares. Which is fine with us… it’s painful to know
that cancer was consuming so much of their thoughts. It’s such a relief to see them almost get to
be normal kids. It is so hard not to
read into everything they do though.
Jude has been pretty clingy lately.
Never wants me to leave and always wants to know exactly how many
minutes until I will return. Probably
normal for a 3 year old, but of course I psycho analyze it. Is he understanding on some level the
ultimate fate of his daddy and so he is clinging to me? <o:p></o:p></div>
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Tomorrow will be Jonathan’s third trial infusion. As I write this blog, he isn’t even
home. I sent him off on another bucket
list trip just after Thanksgiving. A
boys golf trip in California where he gets to play a few courses most all real
golfers will most likely never get to cross off their list. He will get home around midnight and checks
in to the doctor first thing in the morning.
He has to remind me sometimes to enjoy my minutes and not focus on the
bad. He truly is living that every day
and successfully squeezing everything good out of the minutes he has. <o:p></o:p></div>
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He still has not had any side effects from the trial drug
that we know of. He could do this
forever if he had to… If we could be so lucky.
Last time we met with Jonathan’s oncologist we began looking at the
calendar to schedule his next set of scans.
D day if you will. His scan
should be around December 14<sup>th</sup>.
I was actually so relieved when Dr. Raj said, well you know what, “why
don’t we do an extra infusion and just wait until after Christmas?” Our life right now is the exact definition of
the saying ‘ignorance is bliss.’ If we
did not get good news, it would ruin our Christmas. I would be working on arrangements to moving
us to Texas most likely to try to get into this other trial out of Berkley. I think we all would just rather not
know. He is doing so well, at least it
seems like he is.<o:p></o:p></div>
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I’ve asked him a few times if he has any feelings about what
he thinks is happening inside his body.
How does he feel? He said he has
pain at the tumor site in the hip. But
it isn’t something that IBProfin can’t manage.
That wasn’t the case in July and August.
He has enough range of motion still that he can tie his own shoe. Again that wasn’t the case when we found the
second tumor. He gained that range of
motion back during those 2 rounds of chemo… He has maintained his mobility at
the very least. He says he still feels
nothing in his chest. I have no idea if
you can feel lung spots though? I haven’t
asked or researched that. But not
feeling anything can’t be a bad sign right?
So we are going to stay the course!
We are going to enjoy our Christmas, watch our youngest son turn 4 and
then cross off a few more bucket list items before we get that dreaded
scan. It is looking like that will
happen around the second week of January now.
<o:p></o:p></div>
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Jonathan called me on the phone 2 nights ago to tell me
about his golf round for the day. I
wanted to share a story he shared with me.
It brought tears to my eyes as I talked to him. First of all, he was so excited. I could just tell by his voice that he was
just in awe that he actually was getting to play his dream course. I asked how he played. He said he actually played very well for the
first 7 holes. It is almost like the
course designer made it easy to get your hopes up and then puts you in your
place. I said, “so I take it you didn’t
finish well?” He said it didn’t even
matter. The weather was perfect, not a
cloud in the sky and it was just amazing to get to play. I asked how his best friend Scott
played. (I hope Scott doesn’t mind me
sharing this) Jonathan told me that
Scott started off not so good so he just stoped keeping score. This right there is so much of why I love
Scott. He just gets it! He gets Jonathan. He decided to walk the course that day so he
could take everything in with each step.
It didn’t matter what his score was.
But Jonathan said as he approached Scott on the 18<sup>th</sup> green,
Scott had tears in his eyes. I can only
imagine he gave Jonathan a big brother type hug and I’m so glad that he was
there with Jonathan. He completely
enjoyed his minutes and he didn’t let anything stop him from doing that. He had to make a conscious choice though to
make sure that happened. So many times
we think the score matters, but it doesn’t.
It’s the view, it’s the people you are with, it is the opportunity. Scott if you read this. I love you!
And thank you! And Kevin, there
are no words. <o:p></o:p><br />
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On our drive to my parents for thanksgiving Jonathan and I
were chatting about things we were thankful for. You know as horrible as this entire situation
is, because horrible doesn’t even begin to tough the service, there are still
things to be grateful for. I told him I
feel like we are living the actual Tim McGraw song “Live like you are dying.” If you have to go young, I’m grateful that we
have been able to live intentionally.
Many people will live until they are 70 or 60 and still think they have
plenty of time. So they don’t go live. And if I get me answer to prayer, I promise
you, we will be “living” for the next 40 years.
<o:p></o:p></div>
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As I talk about thankfulness, I read a book a couple months
ago that our pastor recommended. “The
Joy in the Journey.” Sharol brought up
this scripture that I really try to remind myself of frequently. As I talk about my fears and everything that
we have been through and may lie ahead, this helps! 2 Corinthians 12:9 “My grace is sufficient
for you, for power is made perfect in weakness.” I had
an old friend remind me recently it is ok to be weak sometimes. <o:p></o:p><br />
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(We had to pull over so the boys could have their first snow ball fight of the winter... yep we are on an off ramp!)</div>
Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.com2tag:blogger.com,1999:blog-1476216962773458117.post-9323168108735071142015-11-01T11:23:00.003-08:002015-11-01T11:23:45.419-08:00What Quality of Life Looks Like!
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<span style="font-family: Calibri;">I’m starting to get emails and texts again asking how things
are going for Jonathan.<span style="mso-spacerun: yes;"> </span>It is so nice to
know people are thinking of us and praying for us constantly.<span style="mso-spacerun: yes;"> </span>So I will give you all a quick update.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">Jonathan started his trial drug on October 21<sup><span style="font-size: x-small;">st</span></sup>.<span style="mso-spacerun: yes;"> </span>Unlike our usual treatments we were able to
go to our doctor’s office instead of the hospital.<span style="mso-spacerun: yes;"> </span>They drew blood and then we met with Dr. Raj
to review the side effects one more time.<span style="mso-spacerun: yes;">
</span>He handed us 4 pages of possible side effects Jonathan could
experience.<span style="mso-spacerun: yes;"> </span>Most of these side effects
looked similar to chemotherapy actually.<span style="mso-spacerun: yes;">
</span>Nausea, diarrhea, losing liver function, losing function of his pituitary
gland, loss of eye site, pain and redness at the tumor site, and on and on and
on.<span style="mso-spacerun: yes;"> </span>We know they have to list every
single side effect ever experienced, but know through extensive research that
most people handle this drug very well.<span style="mso-spacerun: yes;">
</span>It is actually completely the opposite of chemo therapy!<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">The doctor told us that stopping chemo could cause it to be
less effective if we were to go back to it at a later date and reminded us that
he thinks we should keep trying chemo until it becomes ineffective.<span style="mso-spacerun: yes;"> </span>We told him we understand what we are doing
and let’s proceed with the trial drug.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">To be honest, it is so much easier coming to a logical plan
of choosing quality of life, rather than actually doing it.<span style="mso-spacerun: yes;"> </span>Before going to this doctor’s appointment, I
was having a hard time.<span style="mso-spacerun: yes;"> </span>I often am
trying so hard to enjoy my minutes and helping my children enjoy their minutes
that I don’t take time to tell people how incredibly hard this actually
is.<span style="mso-spacerun: yes;"> </span>We have a family friend that cleans
our house each week. <span style="mso-spacerun: yes;"> </span>She told me the
only way she knows how I’m really doing is by how many tissues she is picking
up from the bedside each week.<span style="mso-spacerun: yes;"> </span>There
were a lot of tissues last week.<span style="mso-spacerun: yes;"> </span>The
thought of actually changing our course of action to “quality of life” was
really hard on me.<span style="mso-spacerun: yes;"> </span>I let myself go down
that road of when these fun bucket list trips with Jonathan stop.<span style="mso-spacerun: yes;"> </span>We met with our financial advisor to look at
what my financial situation will look like when I don’t have my husband.<span style="mso-spacerun: yes;"> </span>I take one of my children to play therapy
once a week preparing a relationship for them to have someone to talk to when
they lose their daddy.<span style="mso-spacerun: yes;"> </span>I’ve compiled a
list of conversations I’m terrified to have with my boys because I’m their mom
and it needs to come from their dad.<span style="mso-spacerun: yes;">
</span>Jonathan is working on now writing them letters for me to give them each
year.<span style="mso-spacerun: yes;"> </span>I am praying every day that this
trial is our miracle.<span style="mso-spacerun: yes;"> </span>But we are living
our reality that it probably won’t be.<span style="mso-spacerun: yes;">
</span>We are doing a great job of enjoying ourselves and doing everything we
want to do together.<span style="mso-spacerun: yes;"> </span>We will have no
regrets!<span style="mso-spacerun: yes;"> </span>And we honestly aren’t crying every
day and are successfully enjoying each day.<span style="mso-spacerun: yes;">
</span>But we still allow ourselves bad days too.<span style="mso-spacerun: yes;"> </span>The night before he started the trial was a
bad night…</span></div>
<div align="center" class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">(What Quality Life Looks Like... And Jonathan was not in the hospital and got to see all of it!)</span></div>
<div align="center" class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Went to a Cougar Game</span></div>
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<div style="text-align: center;">
Halloween </div>
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<div align="center">
Making Sugar Cookies (OR playing in flour)</div>
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</div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">After we were finished with the doctor we headed out to the
nice room with recliner chairs and big windows. <span style="mso-spacerun: yes;"> </span>The nurses told us Jonathan’s white blood cell
counts were still actually kind of low but since this isn’t going to effect
that, onward and upward.<span style="mso-spacerun: yes;"> </span>It took 30
minutes and he was done.<span style="mso-spacerun: yes;"> </span>He said he felt
totally fine. <span style="mso-spacerun: yes;"> </span>He even drove home.<span style="mso-spacerun: yes;"> </span>Later that afternoon his face got a bit flush
and he decided he wanted to take a nap.<span style="mso-spacerun: yes;">
</span>He got up, did the dishes, played with the kids, ate dinner normally and
seemed totally fine.<span style="mso-spacerun: yes;"> </span>The next day he
said he felt totally normal!<span style="mso-spacerun: yes;"> </span>No side
effects.<span style="mso-spacerun: yes;"> </span>Now that is has been over a
week, he has started getting some pain in his hip.<span style="mso-spacerun: yes;"> </span>It is hard to tell if it is the tumor growing
or the immune therapy killing the tumor.<span style="mso-spacerun: yes;">
</span>I sure hope the latter.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"></span><o:p></o:p></span> </div>
<span style="font-family: Calibri;">Jonathan has been golfing 3 times since last Wednesday and
is doing great overall.<span style="mso-spacerun: yes;"> </span>He is back to
pre- cancer weight and looks good!<span style="mso-spacerun: yes;"> </span>He
has started coming to the gym with me again in the morning and has been able to
do a cardio machine for 25 minutes before he moves on to the weights.<span style="mso-spacerun: yes;"> </span>His pulse rate is doing much better and is
getting lower than it has been in 18 months now.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">We have been very busy with Cancer Can’t stuff again.<span style="mso-spacerun: yes;"> </span>We’ve been working on thank you
emails/cards.<span style="mso-spacerun: yes;"> </span>I’ve been gathering
samples for my meeting with the hospital and are getting excited to see that
start to come together.<span style="mso-spacerun: yes;"> </span>We are working
on our charitable pharmacy project and have been meeting with new board
members, law makers, attorneys and physicians.<span style="mso-spacerun: yes;">
</span>We feel good that we are able to spend our time working to help other
cancer patients.<span style="mso-spacerun: yes;"> </span>I guess it feels good
to have a purpose.<span style="mso-spacerun: yes;"> </span>We are also very
honored that Cancer Can’t was selected to be the recipient for the SamScramble
funds this year.<span style="mso-spacerun: yes;"> </span>If you can, on New
Years day, please go participate with your family in such a fun and meaningful
event. <span style="mso-spacerun: yes;"> </span>Go to: </span><a href="https://sites.google.com/site/samscramble/home"><span style="color: #0563c1; font-family: Calibri;">https://sites.google.com/site/samscramble/home</span></a><span style="font-family: Calibri;">
<span style="mso-spacerun: yes;"> </span>to register.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Please be praying that this trial is working, and is
actually effectively shrinking Jonathan’s tumors.<span style="mso-spacerun: yes;"> </span>Or even just stopping its growth.<span style="mso-spacerun: yes;"> </span>I know God is giving us so much strength that
we are able to enjoy each day.<span style="mso-spacerun: yes;"> </span>I pray
all the time for this type of strength.<span style="mso-spacerun: yes;">
</span>Please also pray that Jonathan has little to no symptoms as we continue
on this trial.<span style="mso-spacerun: yes;"> </span>So far so good!<o:p></o:p></span></div>
Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.com2tag:blogger.com,1999:blog-1476216962773458117.post-43377192924713478302015-10-16T20:44:00.000-07:002015-10-16T20:44:51.147-07:00Jonathan was accepted into a Trial!!<div class="MsoNormal">
Last Wednesday morning Jax woke up and you could just tell
he woke up on the wrong side of the bed.
I asked him to get dressed for school and he decides his pants didn’t
feel right. So we changed his pants 3
times. Then as he sat and ate breakfast
he was mean mugging Jude the entire time.
He was rude to me and just mean to Jude.
So as I sat down to eat my eggs with the boys, I began to have a little
talk with Jax. I explained how each day
when we wake up we make a choice. We
decide if we are going to be happy and enjoy our day, or we can decide if we
are going to be grumpy. If we choose to
be grumpy our days usually are going to go much worse than if we chose to be
happy. People don’t want to be around
you and include you in fun things if you are grumpy. I asked if he thought if he could choose to
be happy today instead of grumpy. He sat
there for a few minutes and then began to smile. He said he wanted to be happy and we then
began to joke, laugh and have a much better day. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I feel like this is a choice I am consciously making every day
myself. If I decide to focus on the
things that make me sad, it effects my entire day. So Jonathan and I are really trying to spend
each day consciously choosing how our day is going to go. How we are going to look at each day and what
attitude we are going to have. One day
Jonathan actually said to me, “I’m not going to die today, so why are we wasting
our day on crying?” As a result we are
choosing to enjoy each day to the fullest.
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So today I am writing this blog from the New York JFK
airport terminal. Jonathan and I just
had the most incredible week! When Jonathan’s
cancer came back, he made a bucket list of things he would like to do. Some of them I laughed at, and others we
decided to make happen. If you know
Jonathan well, you can just guess what type of items he would include that I
would just laugh at… No need to explain.
Anyway, seeing Time Square in New York was on his list. So I booked the airline tickets around
treatments. I then called my cousin who
just started working here in NYC and told him to plan amazing activities for
us. And did he ever! Most people can live 90 years and never do
any of the things we got to do this week.
I don’t need to list out our entire trip, but the stand out event was
our Tuesday dinner. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When we arrived we were greeted by a guy that had our name
and the entire reservation list memorized.
This was the first time we have ever had a maître d’. It was amazing! We had a 14 course meal with wine on the menu
that costs more than my car. When I got
up to use the restroom, the maître d’ walked me there, and each employee you
walk past, bows at you. Enough
said! Luckily by the end of the evening
we found out our maître d’ was a lower middle class kid from Brooklynn and he
actually loved our inappropriate humor and the fact that we had no idea how to
use a French sauce spoon. In fact for our parting gift, he gave us each
a real silver French sauce spoon wrapped with a bow and printed for us, on very
nice paper the history of this absurd slightly useless sauce spoon. Our evening ended with us joking around with
Questlove, the drummer on Jimmy Fallon, about throwing knives at this birthday
balloon that escaped from a guest. Oh
and yes, we did have escargot! Growing
up I always had escargot in my mind as the food rich people ate. We were so far out of our league at this
restaurant but it was an absolutely incredible experience. This night along with seeing a live Jimmy
Fallon show and box suite seats at a New York Giants game. The week could not have been more fun.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
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<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So now we are on our way back home to see our beautiful boys
AND to officially start a medical trial drug.
Yep, Jonathan was accepted for compassionate use of the drug out of
Duke. Today we met with Dr. Raj and will
discuss our decision of starting the drug.
When we were leaving for New York he called to chat with us about
Jonathan’s scan results from the chemo.
After completing 2 rounds of the ifos etop drugs they scan to see if you
are responding. To refresh your memory,
roughly 25% of osteosarcoma patients respond to this chemo regiment. Of that 25%, for only 5% of those, this
option is curative. And curative only in
conjunction with surgery. For Jonathan,
that means loosing his leg and now a double lung surgery. (which would be very hard to even find a
surgeon who would do that!) So the
results… the tumor in his pelvis did in fact shrink. The multiple tumors in his lungs are stable
and unchanged. So now we know we fall
within that 25%. However because the
lungs didn’t change, we assume we do not fall within the 5%. (This is what Jonathan and I are
concluding) Our oncologist is on the
train of thought that we continue chemo as long as it is responding. It will buy us more time. We are not on that same train! We know we have been approved to start the
use of this trial drug from Duke and know that this drug has far less side
effects than chemo. We don’t know if it
will be effective or not, but at least it offers Jonathan some quality of
life. So today we learned Jonathan is
approved to start the trial on Wednesday.
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The drug from Duke is a phase 2 trial drug called Keytruda. Jonathan was approved to use it here in
Spokane, and our oncologist can administer it.
This drug uses immunotherapy but no virus. The Houston trial that we are still waiting
to hear from uses the chicken pox virus.
The way this drug works to the best of my knowledge is the following:<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The reason your body’s immune system does not try to kill
cancer is because it is technically your own body. It is an over production of your own
cells. But because it is still your own
cells your immune system is told not to attack it. This drug is designed to block the mechanism
on the cancer cell that is telling your immune system that it isn’t
foreign. If this works effectively, your
own immune system will begin to attack the cancer. The side effects include pain and swelling at
the site of the tumor, slight nausea and diarrhea for a couple days after the
infusion. There are some risks of liver
toxicity, and adrenal side effects. There
are other uncommon ones, but nothing like chemo! Jonathan will be getting an infusion of this
drug every 21 days. It is a 30 minute
infusion that can happen at the doctor’s office.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
Thank you to those of you who have been tirelessly praying
for Jonathan to get accepted to use a trial immunotherapy drug. This is potentially huge for him. We would like to ask for more prayers. We would love for this drug to work effectively
for him. We also are hoping for very few
side effects. Pain maybe will be
welcomed, because typically that means it is working! But little nausea etc. would be awesome. Something that would allow Jonathan to have
some quality of life while fighting this.
We hear most people breeze through this treatment. And as always, God could give us a miracle
and just take this from Jonathan. I find
myself stopping in my tracks and asking God to stop time. I can’t think about months from now because I
go to that bad place, but I find myself not wanting anymore tomorrows to
come. <span class="MsoSubtleEmphasis"><o:p></o:p></span></div>
Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.com1tag:blogger.com,1999:blog-1476216962773458117.post-19480329172480355432015-09-27T22:45:00.000-07:002015-09-27T23:02:07.136-07:00Warning, This Get Graphic (By Jonathan)<div class="MsoNormal">
I was watching a football game
last weekend, if you can call it that.
The game was horrible, worst I have ever seen played in the NFL. Even the officials looked like rookies out
there. Becky got several laughs out of
my blurted tantrums hurled at the TV, which fall on deaf ears. It came to an epic point on a forward pass
that was dropped and ruled a fumble (which to everyone watching was a forward
pass, literally everyone). The refs had
a mini conference decided it was a fumble and under review. In slow motion the ball went forward 4
yards!!! 4 yards! Not even close to a lateral fumble. But the refs reviewed it anyway. At some point during this, and this is an
exact quote because Becky wrote it down after laughing, I said “I only have 6
months to live and you’re going to waste it on crappy calls like that? Oh yeah good idea let’s review it, I have
time!”. It may be morbid a little but
please laugh and find the humor. Because
we did, we laughed very hard about it later when Becky told me what I said.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Which leads me to time. I don’t know if I have 6 months, 2 years, 5
years or more. I know I am a very
methodical calculated person who did very well in probability math class. I actually had this Brainiac advanced
calculus super-hot girl cheat off me that entire semester in college. Some of you may know her (I married
her). <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Here is what I know. No one has ever survived beyond 5 years with
my advanced metastatic sarcoma. No one,
period. This counts the 1 year I have
already had the disease. At least not
documented in any medical journals. The
recommended course of treatment now is chemo (ifos/etop regimen) until that one
stops working. Then try a new chemo, and
another all while knowing they will work for a while but the cancer will
spread. The cancer now is smarter than
the chemo, it morphs and grows. The best
case scenario here is chemo for years, in and out of the hospital feeling
extremely lousy all the time.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Becky has been very careful in her
blogs to protect some of my privacy as I fight through chemo. I noticed yesterday she made a facebook post
about my pain with no reference to what was actually happening. I know there is a fine line between TMI and
simply explaining to people what actually people experience while fighting this
awful disease. I’ve decided to tell you
exactly what happens to me the week after getting chemo. Becky has been such an open book that I feel
like I’m doing you all a disservice by holding back. So here goes.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I first start by getting
chemo. I’m nauseous, tired, all the
stuff you already know about. By the
time I get home from the hospital the chemo has hit my brain. I’m constantly dizzy and feel like our house
is not even close to level. Very weird
feeling. Then my white blood cell counts
start to drop. I get mouth sores which
quickly spreads down my stomach and into my GI tract. This has become the most excruciating thing I
have ever experienced. Unfortunately
anything I could get in, has to come out.
I have what we thing to be numerous sores, possibly abscessed sores in
my intestine. There is no way to get
medication to this area without putting me at a huge risk while having no
immune system. There are also no nerves
in your intestine, they all connect out to your rectum, at which point you feel
everything going on before the exit point.
The best way I can think to describe this feeling is like passing glass
shards that are on fire. This of course
leads to an instant infection because now I have open sores where your body has
more bacteria. So then I get sick, really
sick. And this week I got to experience
the absolute kicker. I’m trying to make this “G” rated… from my bum
to my male parts, the skin has begun to peel off. It reminds me of when the boys had diaper
rash. This is by all means my definition
of pure torture. Unless at the hospital
and on IV morphine, the pain is unbearable.
<o:p></o:p></div>
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I have decided this isn’t
living. I’m stuck in a prison cell (no
conjugal visits) for 7-14 days a month and when I am home my body is to beat up
or so suppressed I can’t even go for donuts with my kids. I have maybe a 7 day
window each month that I can get out, play golf, go to the store or kids
school, etc. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
But please understand not doing
chemo and accepting the inevitable is not quitting. I am exploring other options and will do
those until the docs tell me I can’t. I
am simply choosing quality of life over quantity today. We all have an expiration date I am just
blessed to know mine is a lot sooner, which gives me the power to let go and
have fun. Live life now. Because I have years of living to squeeze
into a short period. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
I haven’t given up hope. I pray that one of the trials works or at
least gives me more time. I truly think
one will but accept the fact in may not.
As a probability person I am at least in the game now. The cancer had a 100% advantage on me, the
trials give me a chance to win as slim as it may be. For the casino people out there I need a full
house at the poker table. Or a 5 on
roulette. But I get to be at the table
now as bad as those odds may be. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But this also bring a big struggle
for me. 15 months ago, I was a normal
guy who put on a tie every morning and got to work with his best friend. We were the number 1 mortgage team in most of
the state. I came home every day, went
on a few vacations a year and had a beautiful family, nice home etc. Besides maybe a few interns at the bank I
really didn’t have anyone that looked up to me as an inspiration (and by a few
I mean probably none). I enjoyed my
success and just wanted to make my parents proud and raise my boys to be good
people. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
Then July 2<sup>nd</sup> 2014 happened. My normal world turned over. I wasn’t just a hoe-hum Joe any more. Now I had cancer, my family had cancer. The battle began. Leg surgery, 9 months of chemo and I had won
the battle. Our story was spreading like
wildfire and our non-profit grew to epic sizes in just months. I began to hear things like you’re
inspiration, a hero. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
One of the most difficult things
to process was the compliments from people close to me. A man I respect as a Godly strong father,
blue collar hard worker said I was the toughest person he’s ever met, he works
with lineman and electricians daily (truly tough men). Or a swat trained fire fighter saying I’m a
strong mother-f-ing warrior, he works with actual swat officers, police and
firefighter (true warriors to me). I
don’t know why but that has always been a little difficult to hear especially
from certain people who I thought were those things, but not me.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
In my mind I wasn’t any of those I
was just a guy who had cancer and wanted to help others. Never walked down a street thinking I was
tough, strong or a warrior. Certainly no
hero. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
I am beginning to accept those
compliments and accolades. Becky and I
really have done some amazing work (Becky has, I’ve played a lot of golf). But we have something to be proud of and be
able to look back on. And I truly did go
through some of the worst moments and pains I can imagine to get there. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
It’s often even harder to hear now
because I’m choosing to stop recommended treatment. Is that quitting, not fighting, not being
tough or a warrior? I know it isn’t in
my heart, but it tears me up sometimes thinking all these people won’t feel the
same. But understand I’m not choosing to
quit fighting, I’m just choosing to live.
I’m fighting my cancer by enjoying my minutes more each day (and kind of
driving that super-hot Brainiac nuts in the process with all my cockamamie
ideas). But if you take anything away
from me or my life remember we all have a certain number of minutes left. Worry about living each of those minutes,
truly living and loving those around you.
You don’t get to know when your minutes are out.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
I also need to accept now the real
toughness. Not the Samson tough, tear a
castle down, but the toughness to accept Gods power not our own. Or Gideon’s warrior spirit in trusting God to
send 99% of his troops home before battle.
Or Jesus for that matter, having the strength to walk right into
Jerusalem knowing his fate just days away.
He could have turned around but had the strength and faith in God that
there was something better waiting for him.
No more pain, sickness or death for everyone. That’s tough! <o:p></o:p></div>
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<div class="MsoNormal">
All that isn’t me, but it does
refocus me to say there is toughness and warrior spirit outside of what our own
minds limit us to. I’m no longer a
hoe-hum Joe raising his kids to be good people.
I want them to be more than that.
To be tough, strong warriors like there Dad. I may not have all the time to do that but they
have amazing men and women around them who will.<o:p></o:p></div>
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<br /></div>
<br />
<div class="MsoNormal">
Still praying for that miracle
every day and hoping I have more minutes.
But today I’m choosing to fight cancer by making the most of every
minute I’m given. <o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.com8tag:blogger.com,1999:blog-1476216962773458117.post-48012970739366163012015-09-18T22:28:00.001-07:002015-09-18T22:36:03.569-07:00True Hope<div class="MsoNormal">
Last time I wrote a blog Jonathan was developing an
infection. We were fresh out of the
hospital and on our way right back in. I
sit down tonight from the hospital room looking out the window. I’m beginning to enjoy watching the
helicopters land on the roof of the hospital.
<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
After Jonathan’s last round of Chemotherapy, the seizure
like chills he was experiencing were in fact an infection entering his blood
stream. Upon awaking that next morning,
we went right into the ER. Jonathan’s
blood counts were practically nothing and he had developed a fever that was on
the rise. He had a crazy high pulse rate
and was beginning to experience chest pain.
That ended up being a very long week.
Jonathan felt absolutely horrible.
At one point during that week we had a little scare and I watched a
doctor stand over my husband and ask him, “If your heart stops, would you like
us to resuscitate you?” I breathed a
breath of fresh air as he tells him “yes”.
However he followed that up with, “ask me again in 3 months
though!” He was in horrible pain and was
diagnosed with Klebsiella. (A Bacterial
infection) They began treating him right
away and after platelet infusions, red blood cell infusions, tons of
antibiotics, etc. He began to feel better. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
During that week, Jonathan and I had some very real
conversations. We are currently living
the life we will have while fighting cancer.
In the hospital, out of the hospital, back in the hospital, infection, excruciating
pain, fear and oh yeah, we miss our kids like hell. We are exhausted! What kind of life is this? And lets just be real, not negative, but
real. So if we do all of this, what are
the chances? At this point we know there
has never been someone this far progressed with inoperable Osteosarcoma, live. What is this doing to our family? What is this doing to our children, during
their most influential years? My husband
isn’t a quitter, but what he does do, is consider everything. Every option. Every outcome.
Every person. I think for him to
start considering other choices, he needed to be informed. So one day during the doctor’s rounds, he
asked the big question. How long would
he have if he stopped chemotherapy treatment?
<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
He enjoyed his week at home and made the most of every
minute. He helped me here and there with
the prep for the auction. He worked on
Lego projects, took the kids to do a few fun things and then of course in seven
days played 4 rounds of golf. He
frequently would just fall asleep on the couch.
I don’t know how he does it… He just can’t miss out on any moment
because he is tired I guess.<o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
Besides the conversation Jonathan and I had with the
oncologist, Jax came in at a close second for the hardest conversation I’ve
ever had to have. As we drive to school
I hear from the back seat “Mommy, how do guns kill you?” So I thought I would be very factual and
scientific with my answer. “Well Jax,
you know how a gun shoots out a bullet?
When the bullet hits a person it is going so fast that it goes through
your skin and inside your body where you can’t see. We have some very important things inside our
body that helps keep us alive. For
example, you know when Dr. Raj listen to daddy’s heart?” Jax interested says “yeah, he listens to
daddy’s heart beat.” “Yes Jax, If your
heart is hit with a bullet it can’t beat.
And if it can’t beat it can’t pump blood all around our body. We need blood to stay alive. Dr. Raj also listens to daddy’s lungs. Our lungs help us breath. If a bullet hurts our lungs, you can’t
breathe. So that is how a gun can kill
you.” Jax sits there for a minute
looking out the window as we sit at the first red light. As we approach the next red light I hear him
say “Mommy, is daddy’s cancer trying to hurt the insides of his body?” My heart immediately dropped. I was wondering when he was going to ask me
this… I am not ready, but I answered his question. “Yes Jax, Daddy’s bad guys are trying to hurt
the inside of daddy’s body.” He quickly
fired back, “are they trying to kill daddy?”
I sort of began to cry as we pulled into the parking lot at school. I put the car in part and turned around to
look at him as I answered his question. “Yes
Jax, the bad guys inside daddy are trying to kill him.” I think he was getting sad already and I hope
I didn’t make this harder for him by crying myself. So as he began to cry he asked me, “Is daddy
going to die?” I told him through my
tears that I didn’t know. By this time
he was crying pretty hard and saying “I don’t want daddy to die!” So I reached back and grabbed his hand and I
grabbed Jude’s hand as Jude just sat there completely unsure of how he was
feeling I think. I told them “I don’t
want daddy to die either. But I know
something for sure. Daddy isn’t going to
die today! So we need to make sure daddy
know we love him and give him as many snuggles as we can.” Then Jax remembered something from the book I
wrote him. Once again he reminded us we
need to be happy. Those bad guys hate
that. So we gathered ourselves and
walked into school holding hands the entire way. Then I cried the entire drive home. I don’t know if a mother could ever be ready
to answer that question… But I know I wasn’t ready! <o:p></o:p></div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhn9_yGA0pOnhP_2rSGqozPzoiSquCLsYvuhfTDpQmQGXJ0XV4iOC67Li79Upm21tmMTSVkBRu8mKfBI402ZDPvAk9vKUQqihSRbnbQqjRHV5mvNZbg_w5Q9o10tdxq4wxB2agxH1bmqKhx/s1600/Sept+18.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhn9_yGA0pOnhP_2rSGqozPzoiSquCLsYvuhfTDpQmQGXJ0XV4iOC67Li79Upm21tmMTSVkBRu8mKfBI402ZDPvAk9vKUQqihSRbnbQqjRHV5mvNZbg_w5Q9o10tdxq4wxB2agxH1bmqKhx/s320/Sept+18.jpg" width="244" /></a></div>
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<div class="MsoNormal">
Later that day Jonathan got a call from the people running
the trial out of Duke that we had applied for.
It is also an immune therapy drug using T-Cells but instead of using a
virus it is using a PD1 blocker. This
trial is in a stage 2 and is being used for Sarcoma cancers. It isn’t specific to osteosarcoma, but it is
showing some promise. So we are planning
on starting this trial drug after Jonathan has a set of scans to show us if the
chemo is even doing anything at all. We
are also still waiting to hear back from Houston on that trial as well. We know they have Jonathan’s pathology slides
and are working on the testing. </div>
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<o:p></o:p></div>
<div class="MsoNormal">
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<div class="MsoNormal">
Last Saturday was our big day. Jonathan hosted his first golf tournament,
and I jumped into the deep end and attempted to throw a dinner and
auction. We set out to raise $70,000 to
make some updates to the oncology floor at the hospital. We were so taken back at the generosity of
family, friends and community members that were so supportive of our
cause. Jonathan announced one of our goals
for next year. We are excited because we
have already begun to help change Washington Law so that we can become a
charitable pharmacy and help people have access to medications they may not
have due to no insurance or medications insurance maybe wouldn’t cover. This project is actually already underway… Anyway, we are excited to say we exceeded our
goal and think our numbers are going to come in over $100,000 raised. <o:p></o:p></div>
<div class="MsoNormal">
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<div class="MsoNormal">
This Monday Jonathan checked back into the hospital to once
again start chemo. I think he may have
actually been looking forward to getting some rest! We worked on accounting stuff for Cancer Can’t,
watched some movies, took a few walks and had a few naps. It only takes a couple of days to get stir
crazy though. We are ready to be back
home. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
Jonathan and I both really enjoyed listening to Sean speak
last Saturday. He is actually a really
cool guy. His goal, spread hope! He has this quote (I’m just making up the
numbers because I can’t remember…but you get the concept) “The human body will
last 30 days without food. It will last
6 days without water, but it will only last 30 seconds without hope. Because without hope we have nothing.” I think for all people hope is essential to
life. We have to know that things can
get better. I could easily see how
anyone in our position could begin to feel hopeless. The answer to Jonathan’s question was this:
If he stops all treatment he may have 6-8 months. 2-3 of which would have some quality of life. We hope that a T Cell Trial works for him and
he can be a first for a cure. But mostly
the doctor is hoping it will give him 2-3 years without chemo side effects. He can keep trying chemo and maybe make it 2
years doing that. <o:p></o:p></div>
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I find myself listening to a sermon on hope that was done a
few weeks ago. I seem to listen to it
over and over. It is my reminder that
the hope for Jonathan and I may be for God to give us a miracle. I mean we’ve given him one heck of a platform…
my last blog had 5,000 views. (Like he
needs a platform) And I will never stop
praying for that miracle. But maybe hope
isn’t just that miracle, But our true hope is not of this world. 1 Peter 1:6-9 <span class="text"><b><sup><span style="background: white; font-family: Arial, sans-serif; font-size: 9pt; line-height: 107%;">6 </span></sup></b><span style="background: white;">In all this you greatly rejoice,</span></span><span class="apple-converted-space"><span style="background: white;"> </span></span><span class="text"><span style="background: white;">though now for a little
while</span></span><span class="apple-converted-space"><span style="background: white;"> </span></span><span class="text"><span style="background: white;">you may have had to suffer grief in all kinds of trials.</span></span><span class="apple-converted-space"></span><span style="background: white;"> </span><span class="text"><b><sup style="box-sizing: border-box;"><span style="background: white; font-size: 9pt; line-height: 107%;"><span id="en-NIV-30382" style="-webkit-font-smoothing: antialiased; box-sizing: border-box;">7 </span></span></sup></b><span style="background: white;">These have come so that the proven genuineness</span></span><span class="apple-converted-space"><span style="background: white;"> </span></span><span class="text"><span style="background: white;">of your faith—of greater
worth than gold, which perishes even though refined by fire—may result in
praise, glory and honor</span></span><span class="apple-converted-space"><span style="background: white;"> </span></span><span class="text"><span style="background: white;">when Jesus Christ is revealed.</span></span><span class="apple-converted-space"></span><span style="background: white;"> </span><span class="text"><b><sup style="box-sizing: border-box;"><span style="background: white; font-size: 9pt; line-height: 107%;"><span id="en-NIV-30383" style="-webkit-font-smoothing: antialiased; box-sizing: border-box;">8 </span></span></sup></b><span style="background: white;">Though you have not seen him, you love him; and even though you do not
see him now, you believe in him</span></span><span class="apple-converted-space"><span style="background: white;"> </span></span><span class="text"><span style="background: white;">and are filled with an inexpressible and
glorious joy,</span></span><span class="apple-converted-space"><span style="background: white;"> </span></span><span class="text"><b><sup style="box-sizing: border-box;"><span style="background: white; font-size: 9pt; line-height: 107%;"><span id="en-NIV-30384" style="-webkit-font-smoothing: antialiased; box-sizing: border-box;">9 </span></span></sup></b><span style="background: white;">for you are receiving the end result of your faith, the salvation of
your souls.</span><o:p></o:p></span></div>
<div class="MsoNormal">
<span class="text"><span style="background: white;"><br /></span></span></div>
<br />
<div class="MsoNormal">
<span class="text"><span style="background: white;">This
scripture is such a huge reminder of what true hope is. Although we are sad a lot, we are also able
to find joy in a circumstance I would never choose. It is so interesting because in this sermon
the pastor quoted that quote that I never understood. ”It was the best of times, and it was the
worst of times.” I never knew how that
was possible until now. The other day as
I was making breakfast, Jonathan grabbed me in the kitchen and was having me
dance with him as he sang to me. Jude
yells over from the table “Dad, are you trying to marry mom?” So I was telling a friend about how I feel so
loved by him. Even though we are sad, we
are also so happy. And she reminded me
that there are people that may live their entire life, married, single or
otherwise, and although our time might be short. Most will never know a love like ours. So even if I don’t get 50 years with him, I
will always have that!</span></span><o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.com0tag:blogger.com,1999:blog-1476216962773458117.post-10652717943687699392015-08-27T23:58:00.001-07:002015-08-28T00:08:44.692-07:00Our Worst Fear<div class="MsoNormal">
Tonight after getting Jonathan all of his medication, I
watched him close his eyes, and pray “God, please get me to morning.” It has been another very hard week and a half
since I last updated my blog. And I just
don’t understand why something can’t just go smoothly for him? Or not be complicated? But the truth is Cancer Sucks! And I want to warn you, the following is
going to be hard to read… But probably only half as hard as it was to write.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On Monday last week, Jonathan checked back into the hospital
to start chemo. The nurses were so sweet
and decorated his room in a Hawaiian summer theme. The hospital ordered him a frig and a microwave
for his room. So we were living in style
at the hospital! Before checking in I
insisted we do another baseline scan of Jonathan’s tumor and chest so we knew
the tumors exact starting size. The
doctor here in Spokane didn’t feel it was totally necessary because he just was
scanned 3 weeks prior, but the doctors in Seattle said they would recommend
it. So I was persistent! We did the scan that Monday in the hospital. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Jonathan started
chemo and I was there with him all day. He
seemed to do fine and there was no hallucinations, which was a fear I had. We did notice the chemo regimen seemed a bit
different than what the doctor in Seattle recommended, so I called Seattle and
our doctor here and checked that out.
Turns out we were right and we needed to adjust the chemo. Seems like now that there isn’t a “standard”
of treatment, I need to be on my toes even more. Not sure if a mistake was made or if all the
doctors just needed to agree on the course of action on how to give the
chemo. But we got that all squared away
and it only meant one more day in the hospital…
(I’m preaching it again people, you are your best advocate!) Anyway, Jonathan’s mom delivered his home
cooked meal made by our friends and I headed home to hang out with the boys for
the evening. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The boys were loaded into the bike trailer, I was helping
dad get his bike down off the rack when my phone rang. It was Jonathan. He asked me if I had a second… duh! Apparently Dr. Raj came in for his evening
rounds with the result of the CT from earlier that day. “He said I now have several spots on my
lungs.” Wait what? He was just scanned like 3 weeks ago… no
spots then. Now there isn’t just one
spot, but several. Our worst fear has
now arrived! Yep that fast!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I waited to head back to the hospital so his mom could have
some time with Jonathan alone. Then I
went back at around 10pm so we could be together. We laid in his hospital bed and cried for a while. This is just happening so fast. I feel like just as I begin to cope with the
last hit, I am getting hit with something again. I can’t breathe, I can’t prepare anything in
my head for what is in front of us. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I came back early the next morning so we could talk to the
Dr. together. He explained that there
are 3 spots on his right lung and 2 on his left lung. This is too many to do surgery on. This now eliminates the possibility of doing
surgery on his pelvis, and I think I told you the stats on what the odds are
without removing the tumors. I think
everyone keeps beating around the bush, but we both know the truth is that
unless we come across a miracle, we are looking at his death sentence. So I just asked the question… How Long? I think his answer was, something like this…
If this chemo is effective at slowing this down, 2 years. So Jonathan and I are guessing that if it isn’t
effective, we are looking at probably a fraction of that. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I worked on paperwork for medical trials at the hospital
during the week, as Jonathan was on a 24 hr drip of chemo for 6 days. By Friday he was beginning to feel pretty
crappy. And I was able to take him home
on Sunday. This chemo wasn’t nearly as
bad as the Cisplatin he had to do last time, but it still is working him
over. He said he feels like the ground
is moving or tilting back and forth. So
maybe he is hallucinating? But it is
causing nausea, but not so bad that he isn’t eating anything or drinking. He has been able to eat a little bit and is
doing good with fluids. He says the
worst part is his pain! His tumor only
feels ok when he is up moving around, or maybe just not sitting or laying on
it. When he is in the hospital and feels
like the ground is moving, laying or sitting is his only option. So he says it feels like the tumor is pushing
so hard into his hip joint that he feels like his leg is about to
dislocate. So we are trying to get his
pain under control. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Yesterday he began to feel a bit better. He came down stairs and had breakfast with
the boys, was playing with them on the couch a little and was coming back to
being himself. I told a new friend of
ours that is also battling Osteosarcoma that I would bring him lunch at the
hospital that day. Jonathan said he really
wanted to try to go with me. So he used
all his energy to come with me to visit Ryan.
This guy is incredible and has been battling this crap for a while
now. He is defying the odds left and
right, and faithfully comes back to the hospital for chemo every 3-4
weeks. I cannot even begin to tell you
how strong both these men are.<o:p></o:p></div>
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<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixcyemYGAPs6zYZDOtRuYePPDqVtPOHng0Ma9sgbQoArVS6xSLorzCcHuC3-9KXLXf_gZCtw4i7SV-DIzCzZJiWvoJvtxVCwneYFy_NSrgsrKNgE_RGA71sspI8y3fhUdZgTTGhBV4Ob2E/s1600/ryan+%2526+jon.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixcyemYGAPs6zYZDOtRuYePPDqVtPOHng0Ma9sgbQoArVS6xSLorzCcHuC3-9KXLXf_gZCtw4i7SV-DIzCzZJiWvoJvtxVCwneYFy_NSrgsrKNgE_RGA71sspI8y3fhUdZgTTGhBV4Ob2E/s320/ryan+%2526+jon.jpg" width="320" /></a></div>
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<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So now that Jonathan is starting to feel better in terms of
nausea, he of course is getting mouth soars!
And just like last time, he is beginning to feel soars developing throughout
his GI tract. So we know he has no
immune system right now. And to top it
off… we have a new side effect, 2 actually! </div>
<div class="MsoNormal">
<span style="font-size: 7pt; font-stretch: normal; text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;"> </span></div>
<div class="MsoListParagraphCxSpFirst" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
1. Last
night at about 3 am Jonathan wakes me up.
He is shivering so hard that is was on the verge of being more like a
seizure. I got up, took his temp,
Normal. He said he wasn’t cold and
actually felt warm but could not control his body. I got him some Ativan to calm him and got in
bed and held him tight as if I was going to hold the shaking down. We did that about a half hour. (I think he had been shaking like that for
about 15 minutes before he woke me up) I
finally decided to set a timer… 5 more minutes and I’m calling the Dr. I think at 4 minutes he began to stop and
then fell asleep. I called the dr. first
thing this morning. Turns out he could
have an infection in his blood stream OR it is chemo induced shivers as the
toxins in the tumors are releasing. So
if it persists we need to go to the ER.</div>
<div class="MsoListParagraphCxSpFirst" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-stretch: normal; text-indent: -0.25in;"> 2. </span><span style="font-size: 7pt; font-stretch: normal; text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">Jonathan is having a very high pulse rate.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">This chemo should not be effecting his heart,
this one effects his bladder.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">So it
doesn’t make sense why his pulse is no lower than 110, ever!</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">At times it is even hitting 150 just from
walking to the bathroom.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">He is
breathless, and has chest tightness.</span><span style="text-indent: -0.25in;">
</span><span style="text-indent: -0.25in;">This has been happening for about a week now.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">So I asked the Dr. about that… He asked me to
take his blood pressure.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">Jon was sitting in bed.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">85/123 pulse 117.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">So pressure normal, pulse high.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">Apparently there is a good chance he may have
a pulmonary embolism.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">He is ordering a
chest work up and we are to check in to the imaging place tomorrow.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">If they find a blood clot or see something we
will be checking into the ER.</span></div>
<div class="MsoListParagraphCxSpLast" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
Yesterday I ran an errand and Jude wanted to come with
me. So as I’m driving to the bank, Jude
says “Mommy, I don’t like that daddy has cancer.” I told him I hate it that daddy has
cancer. He then said “Mommy, Jesus has
more magic than those bad guys!” It's funny how a 3 year old can remind you where to find hope.<o:p></o:p></div>
<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So, as I sign off here, I’m going to whisper that same
prayer. “Please let him make it to the
morning, we would love some of that magic about now!”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Thank you to all the families that brought food while Jon was in the hospital this week. It was awesome and a huge blessing to him to have home cooked food.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Also, if you are planning to get tickets to the dinner and auction for the Cancer Can't Foundation, you need to do that this week! <a href="http://www.cancercant.info/">www.cancercant.info</a> </div>
Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.com4tag:blogger.com,1999:blog-1476216962773458117.post-2019339727083137832015-08-15T16:53:00.001-07:002015-08-15T16:53:28.453-07:00More bad news...<div class="MsoNormal">
I haven’t sat down to write in the last week because I’ve
been having such a hard time coming to grips with what is happening to our family. I’ve really been
struggling with this and just when you think it can’t get worse. It does!
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So we had a plan, and I was beginning to wrap my mind around
the plan. I think we were prepared for
what to expect for at least the next few months… And then we went to our follow
up appointment with the surgeon. He
asked if we had spoken with Chappie, the surgeon in Seattle. We hadn’t, and he explained that he had been,
extensively actually. So he began to
explain to us, that the biopsy of the bone came back positive for cancer
cells. He told us the biopsy that he
took was higher up into the hip socket than what we thought. He said it didn’t look like cancer up that
high, but he did the biopsy that high so they knew the required margins for the
next surgery. So now that this biopsy
was positive, that changed the surgery from what we originally discussed. Now a hip replacement was no longer an
option. They would have to remove so
much of his pelvis that there would be no hip socket left to hold his leg. This surgery is going to require that they
amputate Jonathan's leg and remove most of his left pelvis.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Both boys were in the room with us during this
appointment. Jude had his mind set that
he was going to help remove Jonathan’s staples, so we brought them along
thinking there wouldn’t be any big surprises.
We were wrong, and it forced me to hold it together… at least for a few
minutes.<o:p></o:p></div>
<div class="MsoNormal">
So the Doctor continued… This is a very major surgery. You would be in the ICU for days. And I don’t want to sound harsh, but I need
to be frank. Your chances with this
chemo aren’t good. I want you to know I
don’t recommend you even do this surgery.
There was a silence in the room that was far louder than the sound of
Jax playing angry birds on Jonathan’s phone.
I then asked “So is it true that there is a 100% fatality if you do not
remove the complete tumor?” He quietly
says, Yes. Jonathan asked “Is there any chance that chemo
and radiation could shrink the tumor enough that it would change the surgery?” He says, there is a small chance, but not to
get our hopes up for that to be the case.
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0vo8_AG2YQyhOPuG6O1ekGgv1D_J9oAJmpDPQp6IbJkV6CaimY0LNExkYCc8JAKe3u5Rj5Vf2UGpPQ-GJpkDzGd6J_4JQistwSMknA84iWb7QzyX7qPleouK6C0W95xlF7ywmTRwlJJCK/s1600/Aug+7.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0vo8_AG2YQyhOPuG6O1ekGgv1D_J9oAJmpDPQp6IbJkV6CaimY0LNExkYCc8JAKe3u5Rj5Vf2UGpPQ-GJpkDzGd6J_4JQistwSMknA84iWb7QzyX7qPleouK6C0W95xlF7ywmTRwlJJCK/s320/Aug+7.jpg" width="240" /></a></div>
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<br /></div>
<div class="MsoNormal">
We finished our conversation with the doctor, and then the
nurse came in to remove the staples.
Jude jumped to his feet and asked her if he could help. He and Jax had no idea what was just
discussed and that I was trying with every fiber in my being to keep from
crying. Jonathan looked at me with so
much strength in his eyes and whispers “It’s just a leg babe.” I began to help Jude put on some surgical
gloves because he somehow talked the nurse and his daddy into letting him
remove the staples from Jonathan’s butt.
The next thing I knew we were loading the kids into the car and I found
myself crouched by the side of the truck reminding myself to breathe. It was our 11 year anniversary that day, and
I just listened to a doctor tell us to choose quality of life. We got married so young that I knew for sure we would make it to our 50 year anniversary like both my grandparents did... only 11 years and we are already facing this. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
By the time we got home, I had to run upstairs because I
could no longer hold myself together in front of the boys. I think Jonathan started a movie for them
then met me upstairs where we once again cried together. He somehow talked me into continuing with our
anniversary plans for the night. So we
headed out to Northern Qwest Casino to check into a hotel room. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I think I cried off and on for a few days. Jonathan seemed to be doing far better than I
was. As we began to talk through this
together, Jonathan is really focusing on living in the moment. He says he is looking at each day as a gift
and he isn’t looking beyond today. So I’m
going to decide to try my best to follow his example. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We are starting chemo on Monday and are continuing with our
plan. We are praying that the chemo is
effective and does shrink his tumor, even though we know that is unlikely. We may try some radiation as well to see if
that will help at all to shrink the tumor.
I think what we will do after a few rounds of chemo is to remove his
soft tissue tumor. We will have them
test the tumor for the effectiveness of the chemo. If the chemo is working effectively we may at
that point choose to remove the bone portion of the tumor in his pelvis along
with his leg if that is required. If the
chemo isn’t showing really good results, we will leave the bone portion of the tumor and head down
to Houston (assuming we even get into the trial). </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My dad officially retired last week and is
going to become our grandpa nanny. That means we
have full time help with the kids. He
will move with us wherever we need to go.
This has been a huge blessing for Jonathan and I to know that we have
help with the kids, and that they can come with us wherever we need to go. No matter what happens or where we end up, we can do this together, as a family.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Today I finally feel like I’m starting to feel a bit better. Jonathan and I went to see a counselor
yesterday. I think it was good for both
of us. I’m so grateful for the skills we
had gained over the last year that is helping us communicate through this now. I'm so incredibly grateful for Jonathan's strength and peace right now. Somehow he is being the rock and I'm so glad he is leading our family. We had an elder (or more appropriate, I should
say friend) from our church come and pray with us. I told her how I was struggling between the
fact that I KNOW God can change this in a second. He can heal Jonathan!
But I also know that might not happen for Jonathan and 95% is hard not
to face. And I’m finding myself praying
that whatever God’s will is, that I trust his plan is for good, even if I can’t
see it and don't understand it. But MY will is for him to be
cured, and if I had my way, I would change all of this! I feel like I'm praying out of each side of my mouth. I want to be obedient, but I also want my way. She was a great reminder that we
are to go boldly to Christ. And he is
bigger than this. So I’m not going to be
afraid to ask for healing, even in the face of what these odd are. We are not going to allow our fears, this cancer, this satin, to cripple us! We are not going to quit or give up.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I want to thank our support system. You are truly making a difference in our
situation. I think our dinner sign up sheet was full within an hour and a half of being posted on FB! Pastor Joe briefly chatted about
this verse a couple weeks ago. 2
Corinthians 7:5-6” … but we were harassed at every turn – Conflicts on the
outside. Fear on the inside. But God, who comforts the downcast, comforted
us by the coming of Titus.” We are being
comforted by our friends and family. And I want you all to know we see Christ through your support. Thank you for reaching out to us. And thank you for praying for our family.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Specific Prayer Requests:</div>
<div class="MsoNormal">
1. Help us find the Joy in each day and just live in each Moment. This is incredibly difficult, but we know we can win this battle by how we live. And this is how we want to live.</div>
<div class="MsoNormal">
2. Extremely effective chemo with little or less side effects! </div>
<div class="MsoNormal">
3. Acceptance into the medical trial at Houston.</div>
<div class="MsoNormal">
4. Strength</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On another note, Jonathan is planning his chemo schedule around our Cancer Can't dinner and Auction coming up on September 12th. If you can make it to Spokane and want to support us in helping others who are going through this exact same nightmare, we would love that. It does feel really good to help others, and it would feel really good to make this event a huge success. </div>
<div class="MsoNormal">
Speaker: Sean Swarner (<a href="https://www.youtube.com/watch?v=5mi2mmwLsag" target="_blank">check out his story here</a>)</div>
<div class="MsoNormal">
Register: <a href="http://www.cancercant.info/register.html" target="_blank">Click here</a></div>
Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.com0tag:blogger.com,1999:blog-1476216962773458117.post-43949386129334330402015-08-02T23:28:00.001-07:002015-08-02T23:28:50.797-07:00Playing to Win<br />
<o:p>
<span style="font-family: Calibri;">I think Jonathan and I have come to a decision.<span style="mso-spacerun: yes;"> </span>This has been the hardest decision put before
us, and we have cried over it, prayed about it, researched it extensively, and
questioned all advice.<span style="mso-spacerun: yes;"> </span>We still don’t
know if we are making the right decision, but we are both 100% confident this
is the right decision for us.<span style="mso-spacerun: yes;"> </span>We have
decided to pursue the medical trial, and while that is in the works, we will
begin the chemo option.<span style="mso-spacerun: yes;"> </span>We may fail, but in our minds we will be
going down swinging!<span style="mso-spacerun: yes;"> </span>The other day I was
watching the boys fight as brothers do and this just reminds me of our little
Jude.<span style="mso-spacerun: yes;"> </span>His brother knocked him down hard,
he got to his feet, he closed his eyes, put his head down and started throwing
hay makers with all his might.<span style="mso-spacerun: yes;"> </span>The kid
is a scrapper, and he gets it from his daddy!<o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt; tab-stops: 206.1pt;">
<span style="font-family: Calibri;">When we went to Seattle to consult
with the team of doctors at the Sarcoma Clinic, they had a plan for us.<span style="mso-spacerun: yes;"> </span>Their option was to try a new chemo, then
monitor the tumor response.<span style="mso-spacerun: yes;"> </span>Based on
scan results then we cut it out and do more chemo.<span style="mso-spacerun: yes;"> </span>This has the next best odds to what we tried
last time.<span style="mso-spacerun: yes;"> </span>Their team was wavering on
what type of radiation we would add to this approach and when in the game we
would do it.<span style="mso-spacerun: yes;"> </span>They got us all the
information we needed to know about the next best plan and asked if we had
questions.<span style="mso-spacerun: yes;"> </span>So of course we had already
researched our options and knew statistics.<span style="mso-spacerun: yes;">
</span>So I asked… “You say this is the next best option, but what are the odds
this is going to work, because from our research, this is a pretty sucky
option.”<span style="mso-spacerun: yes;"> </span>So at this point she finally
truthfully told us the stats.<span style="mso-spacerun: yes;"> </span>Our next
best chance is 5% - 10%.<span style="mso-spacerun: yes;"> </span>Then and I
quote “Basically we are going to try to keep you alive as long as we can so
science can catch up and maybe we find a cure.”<span style="mso-spacerun: yes;">
</span>So once again because of our extensive research, Jonathan asked “well
what about a medical trial?”<span style="mso-spacerun: yes;"> </span>She
basically explained to us that at this point it is an option for us, but they
wouldn’t recommend it.<span style="mso-spacerun: yes;"> </span>There are no
statistics and typically they only use that option when the tumor burden
becomes so high that chemo therapy is not working.<span style="mso-spacerun: yes;"> </span>A clinical trial is your last ditch
effort.<span style="mso-spacerun: yes;"> </span>So we pushed some more.<span style="mso-spacerun: yes;"> </span>We talked about the research we had done on
the specific trials using T-Cell Therapy.<span style="mso-spacerun: yes;">
</span>We told her we had watched a documentary where they have basically found
a cure for leukemia with HIV and T-Cells.<span style="mso-spacerun: yes;">
</span>We asked her what she thought of 2 specific trials exploring this
science.<span style="mso-spacerun: yes;"> </span>She said they have
promise.<span style="mso-spacerun: yes;"> </span>However they are in early
stages and we should wait until they have more information on dosing etc.<span style="mso-spacerun: yes;"> </span>BUT we should start down this road.<span style="mso-spacerun: yes;"> </span>She said we could begin testing for markers
that the trial would need.<span style="mso-spacerun: yes;"> </span>Get the
information so that later on, we were more ready to go when his tumor burden
become to excessive to just cut out.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">We walked away from that appointment feeling no better than
we went in.<span style="mso-spacerun: yes;"> </span>Their plan was everything we
read about the typical course of treatment.<span style="mso-spacerun: yes;">
</span>I find it very interesting that until prompted she wasn’t going to tell
us how bad the odds were of that plan.<span style="mso-spacerun: yes;">
</span>Until prompted she wasn’t even going to give us the option of a medical
trial yet.<span style="mso-spacerun: yes;"> </span>Doctors are trained based on
pure statistical data.<span style="mso-spacerun: yes;"> </span>If something
can’t offer any data, it is a worse option than 5%.<span style="mso-spacerun: yes;"> </span>Even if it means living your entire existence
on chemotherapy while chopping your body apart piece by piece.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">So then we had our appointment with our local doctor.<span style="mso-spacerun: yes;"> </span>Our second opinion if you will.<span style="mso-spacerun: yes;"> </span>He is less trained in the sarcoma world but
he has become more than just our doctor.<span style="mso-spacerun: yes;">
</span>We were looking forward to our appointment with Dr. Raj because we knew
our conversation could be far more personal.<span style="mso-spacerun: yes;">
</span>So as we start the conversation he asks what Seattle recommend we
do.<span style="mso-spacerun: yes;"> </span>We told him… and he said well I have
another idea we can consider.<span style="mso-spacerun: yes;"> </span>Since your
odds are that the tumors are just going to keep coming back, maybe we skip the
chemo initially and just cut out the tumors as we can.<span style="mso-spacerun: yes;"> </span>We have the medical capability to cut mets
out of your lungs, which the tumors will eventually start landing there.<span style="mso-spacerun: yes;"> </span>Then when the tumor burden becomes too high
to keep just cutting them out, then we can start chemotherapy.<span style="mso-spacerun: yes;"> </span>This will allow you a better quality of life
for a longer period.<span style="mso-spacerun: yes;"> </span>You won’t be
constantly immune suppressed, you can feel well enough to participate in family
life, you are just dealing with surgery, not both surgery and chemo at the same
time.<span style="mso-spacerun: yes;"> </span>Then once the chemo does what it
can do, we move to the clinical trials.<span style="mso-spacerun: yes;">
</span>And somewhere along that road you hope for the miracle that the next
tumor doesn’t happen.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Although this option sounds awful, I totally was following
his train of thought.<span style="mso-spacerun: yes;"> </span>He was taking into
consideration our family, and Jonathan’s quality of life left based on the
statistics.<span style="mso-spacerun: yes;"> </span>Then we asked if he read all
the clinical trials we sent him.<span style="mso-spacerun: yes;"> </span>He said
he had read them, and he called multiple colleagues around the country who deal
more specifically with sarcoma.<span style="mso-spacerun: yes;"> </span>We asked
him what they thought of the T-Cell science or concept for treating this.<span style="mso-spacerun: yes;"> </span>He explained how it worked and why it is a
great idea.<span style="mso-spacerun: yes;"> </span>He said this is basically
being used as the answer for leukemia, and has so much promise but there is
still so much to figure out.<span style="mso-spacerun: yes;"> </span>So I asked
him “So if our odds are 5% or we don’t know, 5% doesn’t seem that much better
than 0%, so to me they are the same thing.<span style="mso-spacerun: yes;">
</span>Why are people waiting so long to try the trial?”<span style="mso-spacerun: yes;"> </span>His answer, “I don’t know!”<span style="mso-spacerun: yes;"> </span>So he began to talk it out.<span style="mso-spacerun: yes;"> </span>You know you make a valid point… are these
trial statistics even skewed because the only patients they get are on their
death bed.<span style="mso-spacerun: yes;"> </span>The amount of work that these
T-Cells would have to do to be successful is a ton when the tumor burden is so
high.<span style="mso-spacerun: yes;"> </span>That also makes the side effects
of the TCell therapy way worse based on how it is working.<span style="mso-spacerun: yes;"> </span>So Jonathan asked him that question that
probably every doctor gets… “If this was your son, what would you do?”<span style="mso-spacerun: yes;"> </span>But this time when Jonathan asked this
question, this doctor actually really thought about it.<span style="mso-spacerun: yes;"> </span>He sat there for a second I think sincerely
taking it to heart, and then he said “I would get into a T-Cell trial,
whichever one can get you in faster.”<span style="mso-spacerun: yes;">
</span>(because there is only 2)<span style="mso-spacerun: yes;"> </span>He gave
us a list of things we needed to do, questions we needed to ask.<span style="mso-spacerun: yes;"> </span>He said he would be our advocate and get the
trial facilitators his cell number.<span style="mso-spacerun: yes;"> </span>And
worse case, we can always come back to these other 2 horrible options!<span style="mso-spacerun: yes;"> </span>Chemo and surgery will always be here…<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">So now we need to get accepted!!<span style="mso-spacerun: yes;"> </span>Jonathan and I have been working diligently
to get into these trials.<span style="mso-spacerun: yes;"> </span>There are 1
million questions and 2 million hurdles.<span style="mso-spacerun: yes;">
</span>Turns out after making some phone calls, the trial out of Duke is
currently closed.<span style="mso-spacerun: yes;"> </span>We did find out though
that when and if it reopens and if Jon can get in, we don’t have to move to
North Carolina.<span style="mso-spacerun: yes;"> </span>Our local doc is working
on the paperwork for a compassionate use of this trial but who knows how long
or if it will work.<span style="mso-spacerun: yes;"> </span>But we are also 11
on the waiting list when it reopens.<span style="mso-spacerun: yes;"> </span>Next
option… Texas!<span style="mso-spacerun: yes;"> </span>Jonathan called and spoke
with the main doctor.<span style="mso-spacerun: yes;"> </span>Dr. Wang told
Jonathan she didn’t think this was a good idea.<span style="mso-spacerun: yes;">
</span>It was phase 1 and there are obvious risks… So Jonathan and I talked and
I of course jumped online to promptly email her myself.<span style="mso-spacerun: yes;"> </span>(I’ve never liked being told no)<span style="mso-spacerun: yes;"> </span>She called me right back.<span style="mso-spacerun: yes;"> </span>We had a long conversation, and the next
thing we knew, we were getting his biopsy tested to make sure he
qualifies.<span style="mso-spacerun: yes;"> </span>I got her to call Dr. Raj
here in Spokane, who also plead our case why Jonathan would be their best lab
rat yet and we are well aware that the risks aren’t that much greater now,
rather than later!<span style="mso-spacerun: yes;"> </span>So they came up with
a plan!<span style="mso-spacerun: yes;"> </span>It takes 2 weeks to test
Jonathan’s tumor for the HER2 marker.<span style="mso-spacerun: yes;"> </span>If
he doesn’t test positive, this door shuts in our face!<span style="mso-spacerun: yes;"> </span>If he is testing positive, he can be accepted
into the trial.<span style="mso-spacerun: yes;"> </span>After going through
those hoops, it takes at least 8 weeks to grow the TCell therapy infusion.<span style="mso-spacerun: yes;"> </span>So while we are going through these hoops we
are going to begin chemo and go down this road of option 1 recommended by
Seattle doctors.<span style="mso-spacerun: yes;"> </span>If he tests positive we
will be pursuing the medical trial simultaneously.<span style="mso-spacerun: yes;"> </span>Dr. Wang is consulting with her group to see
if they will allow us to freeze his TCell growth until his next tumor
comes.<span style="mso-spacerun: yes;"> </span>(Once we remove the tumor in his
hip, it disqualifies him from the trial)<span style="mso-spacerun: yes;">
</span>So they are assuming the risk that there is a 5% - 10% chance that Jon
is cured and these Tcells will be wasted.<span style="mso-spacerun: yes;">
</span>BUT if a tumor does come back, we won’t have to wait 12 weeks to start
the TCell therapy.<span style="mso-spacerun: yes;"> </span>It will be ready for
him, even if the tumor is resectable just like this one.<span style="mso-spacerun: yes;"> </span>Then we will head down to Texas and begin the
trial!<span style="mso-spacerun: yes;"> </span>(Before he is infested with
tumors, hoping that less tumor burden will help)<span style="mso-spacerun: yes;"> </span>So that’s the plan!<span style="mso-spacerun: yes;"> </span>We will be starting chemo here in Spokane
soon…<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">As I lay in bed and my mind races, once again it crossed my
mind.<span style="mso-spacerun: yes;"> </span>What if we hadn’t done our own
research?<span style="mso-spacerun: yes;"> </span>Truthfully, we probably would
not have even been told clinical trials were even an option for us yet.<span style="mso-spacerun: yes;"> </span>Jonathan qualifies because he is stage 4, but
by the standard of how these doctors are trained, this isn’t a good option yet,
so we aren’t going to present it!<span style="mso-spacerun: yes;"> </span>We
have not yet exhausted all our options that at least offer some statistics.
(even if it is only 1%)<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>We would not even be given the right to make
this choice for ourselves!<span style="mso-spacerun: yes;"> </span>Beyond that,
there are like 15 sarcoma trials.<span style="mso-spacerun: yes;"> </span>Most
are other types of chemo, or different agents tried with chemo.<span style="mso-spacerun: yes;"> </span>We aren’t just doing any trial, we have
researched the ones we believe to show the most hope.<span style="mso-spacerun: yes;"> </span>So I can’t tell you that this is going to
work.<span style="mso-spacerun: yes;"> </span>I can’t tell you if this is going
to save Jonathan’s life… but for all of you people out there that don’t
advocate for yourself or a loved one.<span style="mso-spacerun: yes;">
</span>I’m here to tell you first hand, you need to do your due diligence.<span style="mso-spacerun: yes;"> </span>You need to research and know your options!<span style="mso-spacerun: yes;"> </span>Because now we have some tiny glimmer of
hope.<span style="mso-spacerun: yes;"> </span>Just maybe Jonathan won’t have to
suffer through years of chemotherapy.<span style="mso-spacerun: yes;">
</span>Just maybe he won’t be cut apart piece by piece.<span style="mso-spacerun: yes;"> </span>We are going to go against the crowd.<span style="mso-spacerun: yes;"> </span>We are going to throw the Hail Mary on the
first down (well second down I guess) for the win, instead of wait for the 4<sup><span style="font-size: x-small;">th</span></sup>
down when the defense expects it!<span style="mso-spacerun: yes;"> </span>We are
going down swinging and maybe just maybe we find a miracle now, and not after
he has suffered for years already.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;"></span> </div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I’m going to assume that most of you don’t really understand
or are not well informed about what T-Cell Therapy is… why would most people
know about it?<span style="mso-spacerun: yes;"> </span>If you don’t have cancer
it isn’t something you would be researching.<span style="mso-spacerun: yes;">
</span>Here is a link to a documentary briefing that was done specific to
t-cell therapy advances that Jonathan and I found last year.<span style="mso-spacerun: yes;"> </span>This concept has for all intensive purposes
become the cure to leukemia. <span style="mso-spacerun: yes;"> </span></span><a href="https://m.youtube.com/watch?v=k-z22u2003k" target="_blank"><span style="color: blue; font-family: Calibri;">https://m.youtube.com/watch?v=k-z22u2003k</span></a><span style="font-family: Calibri;">
(If you have the time, find the full HBO version documentary, this is extremely
informative) <span style="mso-spacerun: yes;"> </span>Here is also a link to a
blog of a patient going through the trial at Baylor with the Chicken Pox Virus
and T-Cell Therapy.<span style="mso-spacerun: yes;"> </span>He does a great job
of explaining, and if you watched the HBO thing, our opinion is, for him, it
working!<span style="mso-spacerun: yes;"> </span></span><a href="http://vogelzoo.blogspot.com/search?updated-min=2015-01-01T00:00:00-08:00&updated-max=2016-01-01T00:00:00-08:00&max-results=35" target="_blank"><span style="color: blue; font-family: Calibri;">http://vogelzoo.blogspot.com/search?updated-min=2015-01-01T00:00:00-08:00&updated-max=2016-01-01T00:00:00-08:00&max-results=35</span></a><span style="font-family: Calibri;"><span style="mso-spacerun: yes;"> </span>We do know as of right now, TCells are not
working well on solid tumors.<span style="mso-spacerun: yes;"> </span>So this is
still a huge uphill battle, but it is some form of hope none the less.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
</o:p><o:p><span style="font-family: Calibri;">So we are now beginning to pick ourselves up off the ground, brush ourselves off and getting ready to battle. No more pity party, or crying all the time! I feel a little bit like Jude... lets just close our eyes, put our heads down and start swinging. We can just pray we land a hard hit before we get hit! </span></o:p><br />
<o:p><span style="font-family: Calibri;"></span></o:p><br />
<o:p><span style="font-family: Calibri;">If I could throw out a prayer request? Please pray that Jonathan tests positive for that HER2 marker. If he doesn't then we can't get into that trial in Texas and that would feel like another devastating blow. </span></o:p><br />
<o:p><span style="font-family: Calibri;"></span></o:p><br />
<o:p><span style="font-family: Calibri;">Once we know our hospital schedule, I will ask Nikki to start a food sign up again for dinners for Jonathan in the hospital. That was probably the number 1 blessing to us last time we went through this! I know so many of you have offered to bring food, so that will be the most help. Thank you all for your prayers and support. </span></o:p>Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.com4tag:blogger.com,1999:blog-1476216962773458117.post-22309942565615257672015-07-27T23:02:00.002-07:002015-07-27T23:02:34.869-07:00Lets Play a Game!
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Some of you may remember the game “would you rather?”<span style="mso-spacerun: yes;"> </span>I think most of us probably played the game
when we were in high school and it was typically pretty immature and looked
something like this:<span style="mso-spacerun: yes;"> </span>Would you rather
slide down a razor blade into a pool of rubbing alcohol, OR French kiss the
ugliest boy in your history class that is sporting a face full of warts?<span style="mso-spacerun: yes;"> </span>And of course your friends made you pick one…<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Well I would like to personally welcome you to the world’s
worst real life game of Would You Rather!<span style="mso-spacerun: yes;">
</span>Before I give you your selection choices, let me explain a bit more about
the prognosis.<span style="mso-spacerun: yes;"> </span>Oh and don’t forget, this
isn’t a dream and you do actually have to pick one!<span style="mso-spacerun: yes;"> </span>(well at least we do…)<o:p></o:p></span></div>
<br />
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<span style="font-family: Calibri;"></span> </div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Diagnosis: Metastatic Osteosarcoma (also known as stage 4).<span style="mso-spacerun: yes;"> </span>After completing short of 1 year of chemo
therapy and 1 major surgery.<span style="mso-spacerun: yes;"> </span>Jonathan
has a second tumor that has been found in both the pelvis bone and the soft
tissue surrounding that bone.<span style="mso-spacerun: yes;"> </span>It appears
to be 1 tumor about 3 cm in size located at the bottom of his pelvis on that
bone where you sit.<span style="mso-spacerun: yes;"> </span>Over the last 3 months
I had so many people ask if Jonathan was in remission, or I would hear people
say he was in remission.<span style="mso-spacerun: yes;"> </span>Eventually I
just stopped correcting the misnomer.<span style="mso-spacerun: yes;">
</span>With this type of cancer, they can never tell you if you are cancer
free.<span style="mso-spacerun: yes;"> </span>They only know if you have tumors
or not.<span style="mso-spacerun: yes;"> </span>Because Jonathan has developed a
second tumor, they can assume the cancer is all through his entire body… There
is just no way to detect that for sure.<span style="mso-spacerun: yes;">
</span>But we can confirm the chemotherapy didn’t work since there is a
subsequent tumor.<span style="mso-spacerun: yes;"> </span>Therefore he is
declared stage 4.<span style="mso-spacerun: yes;"> </span>Statistics say now
that he has roughly a 5% - 10% chance to live for up to 5 more years.<span style="mso-spacerun: yes;"> </span>Those 5 years will be spent on random chemotherapy
the majority of the time, as tumor after tumor develop until we can no longer cut
them out.<span style="mso-spacerun: yes;"> </span>I’m not trying to sound grim,
but want to be honest about the severity of what we are facing.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Last Wednesday Jonathan did a PET scan to confirm that there
is only 1 tumor at this time and it is in his left pelvis.<span style="mso-spacerun: yes;"> </span>(The opposite side as the other tumor which
was in his right femur)<span style="mso-spacerun: yes;"> </span>On Thursday the
surgeon in Spokane did a biopsy of the tumor to confirm our suspicion. <span style="mso-spacerun: yes;"> </span>During surgery he looked at the soft tissue
tumor under the microscope to confirm that it was the osteosarcoma.<span style="mso-spacerun: yes;"> </span>So with the prelim results we know enough…
Now this biopsy surgery isn’t your typical minimally invasive poke a needle in
type of surgery.<span style="mso-spacerun: yes;"> </span>Jonathan has about a 12”
incision down his entire butt cheek and down his hip.<span style="mso-spacerun: yes;"> </span>He was given a couple days to recover before
we had to get in the car and travel to Seattle to see our team of doctors at
the Seattle Cancer Care Alliance.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Alright, now you are informed… Ready to play?<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Option 1: This is the recommended course of action by both
the surgical oncologist and the medical oncologist.<span style="mso-spacerun: yes;"> </span>Jonathan would be put on a completely new
type of chemotherapy.<span style="mso-spacerun: yes;"> </span>Each treatment
cycle would be 3 weeks consisting of a 5 day stay in the hospital followed by a
2 week stay at home.<span style="mso-spacerun: yes;"> </span>He would experience
nausea, mouth sores, severe hallucinations, neutropenia, anemia, hair loss… no
need to continue, I think you get the idea.<span style="mso-spacerun: yes;">
</span>He would do 2 to 4 cycles of treatment.<span style="mso-spacerun: yes;">
</span>Depending on the success would determine when he would have surgery.<span style="mso-spacerun: yes;"> </span>Surgery would include soft tissue tumor
removal along with a portion of his pelvis.<span style="mso-spacerun: yes;">
</span>Depending on the spread of the tumor, possibly a hip replacement as
well.<span style="mso-spacerun: yes;"> </span>During surgery they may do
surgical radiation.<span style="mso-spacerun: yes;"> </span>After surgery he
would do possibly proton therapy radiation, as well as neutron therapy
radiation.<span style="mso-spacerun: yes;"> </span>Then 4 more cycles of
chemotherapy.<span style="mso-spacerun: yes;"> </span>This option has a 5% to
10% success rate of no return of the cancer.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Option 2: Clinical trial.<span style="mso-spacerun: yes;">
</span>There is a phase 1 clinical trial at Baylor University in Texas, and a phase
2 clinical trial at Duke in North Carolina.<span style="mso-spacerun: yes;">
</span>First Jonathan would need to qualify and be accepted into the
trial.<span style="mso-spacerun: yes;"> </span>The concept behind the trials are
T-Cell therapy combined with a Virus.<span style="mso-spacerun: yes;">
</span>They do not share the success statistics, and do not know as much about
the side effects.<span style="mso-spacerun: yes;"> </span>You are essentially a
lab rat!<span style="mso-spacerun: yes;"> </span>We do know that T-Cell therapy
combined with the HIV virus has essentially become the cure for leukemia. <span style="mso-spacerun: yes;"> </span>This concept is very promising, but is very
experimental at this point.<span style="mso-spacerun: yes;"> </span>They would
leave the tumor in to monitor the success of the treatment.<span style="mso-spacerun: yes;"> </span>(We do know that there is a 0% success in
treating osteosarcoma if you do not remove the tumors)<span style="mso-spacerun: yes;"> </span>So I would assume at some point you would
still have the surgery and then continue the T-Cell treatment after.<span style="mso-spacerun: yes;"> </span>The same concept as the chemotherapy.<span style="mso-spacerun: yes;"> </span>If your tumor is growing and you are not
responding to treatment, they will kick you out of the study and you would return
home at which point you would go back on chemotherapy, or find another
trial.<span style="mso-spacerun: yes;"> </span>There are no statistics available
for this option. <span style="mso-spacerun: yes;"> </span>We are going to have
our local oncologist, Dr. Raj, look into these options way more extensively
this week.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Risks – If you choose option #2, there is a potential that
the tumor would become too big to do just a hip replacement.<span style="mso-spacerun: yes;"> </span>If the treatment did not work and the tumor
grew quickly, It may result in an amputation of his leg and pelvis.<span style="mso-spacerun: yes;"> </span>If you choose option #1, the tumors could
continue to grow and would potentially reach a point where you would not
qualify for the trials.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Benefits – If you choose option #1, it might just work, well
5% - 10%.<span style="mso-spacerun: yes;"> </span>The chemotherapy can be done
at home here in Spokane.<span style="mso-spacerun: yes;"> </span>If it doesn’t
work, we can try a trial if it isn’t too far progressed, and maybe the trial
will be more advanced to a point of a phase 3 and would have more information
on success rates.<span style="mso-spacerun: yes;"> </span>If you choose option
#2, it might just work!<span style="mso-spacerun: yes;"> </span>You wouldn’t
have to suffer through chemotherapy.<span style="mso-spacerun: yes;"> </span>The
tumor would shrink so much that the surgery would be less invasive.<span style="mso-spacerun: yes;"> </span>If it doesn’t work, there is always
chemotherapy… <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">So there you have it!<span style="mso-spacerun: yes;">
</span>What would you rather?<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I’ve had so many people tell me they can’t imagine what we
are going through… and I would never want anyone I know to experience
this.<span style="mso-spacerun: yes;"> </span>There are so many emotions or
thoughts that you go through.<span style="mso-spacerun: yes;"> </span>I remember
when I wrote the last blog, I read a post one of my cousin’s wrote when he
shared the blog.<span style="mso-spacerun: yes;"> </span>He called Jon a
warrior.<span style="mso-spacerun: yes;"> </span>I instantly started crying when
I saw it because I’m not ready to go back to war.<span style="mso-spacerun: yes;"> </span>In fact I would rather he go to real war… his
odds are probably better dodging real bullets.<span style="mso-spacerun: yes;">
</span>I can’t seem to pick myself up off the ground and gather myself enough
to do this all over again.<span style="mso-spacerun: yes;"> </span>I question if
I’m being negative because I’m trying to cope with the reality of the 90%
chance instead of being determined that will never happen.<span style="mso-spacerun: yes;"> </span>I feel so alone… no one knows what to say to
us, or what this really feels like.<span style="mso-spacerun: yes;"> </span>Well
except Jonathan’s mom in which case we sit on the phone crying screaming the F
word at the top of our lungs.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">This week our goal is to reach out to our therapist at
cancer care NW.<span style="mso-spacerun: yes;"> </span>I also would assume there
is grief counseling at our church, we are going to look into that.<span style="mso-spacerun: yes;"> </span>I think Jax is at a point where he should
begin doing counseling.<span style="mso-spacerun: yes;"> </span>We know we can’t
do this on our own.<span style="mso-spacerun: yes;"> </span>Even though we feel
so alone, we will need our family and friends more than ever.<span style="mso-spacerun: yes;"> </span>We need to stay active to fight off
depression with exercise and a healthy diet. We are going to pick ourselves up of the floor and fight this... I just think the more you get hit, the harder it gets to get back up!</span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">We also keep getting the question, “how is your faith?”<span style="mso-spacerun: yes;"> </span>I don’t think either of us is angry about
this.<span style="mso-spacerun: yes;"> </span>I know for a few days, I didn’t
pray… I had too many questions for God and I was so confused I didn’t know what
to say.<span style="mso-spacerun: yes;"> </span>I think mostly I’m struggling
with the fact that his plan isn’t my plan!<span style="mso-spacerun: yes;">
</span>I know God knows exactly how I feel… His son unrightfully suffered too.<span style="mso-spacerun: yes;"> </span>I’m sure he felt the same pain we are feeling
now.<span style="mso-spacerun: yes;"> </span>His heart is breaking too…<span style="mso-spacerun: yes;"> </span>But You know what else, his son unrightfully
died!<span style="mso-spacerun: yes;"> </span>Why couldn’t there have been a
better plan?<span style="mso-spacerun: yes;"> </span>The plan was a perfect sacrifice…
And it saved everyone! <span style="mso-spacerun: yes;"> </span>I don’t know what
the plan is for Jonathan, but I know the reality isn’t always candy and
rainbows!<span style="mso-spacerun: yes;"> </span>I cried uncontrollably while
watching the passion of the Christ, and I still had no idea what this really
feels like.<span style="mso-spacerun: yes;"> </span>I guess I feel like Abraham
leading Isaak up the mountain.<span style="mso-spacerun: yes;"> </span>I’m happy
because God’s plan worked out for Abraham and Isaak.<span style="mso-spacerun: yes;"> </span>So I do know he can change this in a second,
I 100% trust that!<span style="mso-spacerun: yes;"> </span>I’m just confused why
we are even being asked to head up the mountain AGAIN… But after the last year,
I know how much good came from such a horrible experience.<span style="mso-spacerun: yes;"> </span>So I know God has a plan again.<span style="mso-spacerun: yes;"> </span>I just wish his plan was the same as mine! <o:p></o:p></span></div>
Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.com2tag:blogger.com,1999:blog-1476216962773458117.post-61694379387640017902015-07-19T16:59:00.001-07:002015-07-19T16:59:08.384-07:00Round 2
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Last time I wrote a blog I was letting everyone know
Jonathan’s scan was clear.<span style="mso-spacerun: yes;"> </span>We were off
to celebrate and make up for time lost by traveling with the kids.<span style="mso-spacerun: yes;"> </span>We went to the Oregon coast, then off to
Hawaii.<span style="mso-spacerun: yes;"> </span>We’ve taken the kids golfing and
are at the pool playing and enjoying every moment of summer together as a
family.<span style="mso-spacerun: yes;"> </span>We have truly had a wonderful 3
months!<span style="mso-spacerun: yes;"> </span>But sadly, 3 months is all we
will be getting…<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">On our drive home from the Oregon coast, Jonathan started to
get pretty uncomfortable sitting in the car.<span style="mso-spacerun: yes;">
</span>His hips were hurting and it slowly has gotten worse.<span style="mso-spacerun: yes;"> </span>In fact, he can’t even ride in my car now,
sitting in that particular position is excruciating to him.<span style="mso-spacerun: yes;"> </span>So when we went in for his 3 month scan in
June, we were pretty nervous.<span style="mso-spacerun: yes;"> </span>I think we
would be less nervous if he wasn’t having pain anywhere.<span style="mso-spacerun: yes;"> </span>We got the news that his scans were
clear.<span style="mso-spacerun: yes;"> </span>That tiny spot that once showed
up on his very first PET scan a year ago was back again, but such a small absorption
rate that it is nothing.<span style="mso-spacerun: yes;"> </span>(Just like the
first time we explored it)<span style="mso-spacerun: yes;"> </span>But since he
was having pain and it isn’t cancer, we need to figure out what is going
on.<span style="mso-spacerun: yes;"> </span>So the Dr. ordered an MRI of his
pelvis/hip looking for meniscus issues or maybe a stress fracture from walking
on that one leg only for the last year.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">So about a month later… this last Thursday, Jonathan went in
for his MRI.<span style="mso-spacerun: yes;"> </span>Upon leaving the MRI, he
asked for his disk of images so we could look at them at home.<span style="mso-spacerun: yes;"> </span>The computer kept freezing so the
receptionist asked if he could come back on Friday.<span style="mso-spacerun: yes;"> </span>So he did… Then he took the kids to swimming
lessons.<span style="mso-spacerun: yes;"> </span>Jax got stung by a bee of
course that day.<span style="mso-spacerun: yes;"> </span>So instead of playing
golf after swimming, they went right home so Jax could relax and watch a
movie.<span style="mso-spacerun: yes;"> </span>I decided to go out for a
pedicure with a friend and get some work done for the non-profit while the boys
were supposed to be golfing.<span style="mso-spacerun: yes;"> </span>So once
Jonathan got the boys settled on the couch watching their movie, he plugged the
disc into the computer to see if he could see anything… Unfortunately, what he
saw is horrifying.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">It looks like a giant white spot on the left groin area of
his pelvis… the same looking white spot that was on his leg.<span style="mso-spacerun: yes;"> </span>He immediately called the oncology office to
ask if they have looked at the scans.<span style="mso-spacerun: yes;">
</span>The Dr. pulled them up and confirmed what he was looking at wasn’t
good.<span style="mso-spacerun: yes;"> </span>He said he will need to have a
surgery to biopsy it to confirm what we think it is, and get another PET
scan.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Jonathan then calmly called me and told me Jax got stung and
I should probably just come home.<span style="mso-spacerun: yes;"> </span>So I
did… As I walked into the house, the boys are quietly watching a movie and I
turn to see Jonathan sitting on our chair in the office.<span style="mso-spacerun: yes;"> </span>He has tears rolling down his face and I can
see his feet tapping anxiously.<span style="mso-spacerun: yes;"> </span>He
looked at me and I knew!<span style="mso-spacerun: yes;"> </span>I dropped
everything I had in my hands to the floor and started screaming there was a
spot wasn’t there?<span style="mso-spacerun: yes;"> </span>At first I was angry…
How could they have missed this just a month ago it was clear!?<span style="mso-spacerun: yes;"> </span>Then I wanted to see the scans myself… to my
horror it was just as big as the last one!<span style="mso-spacerun: yes;">
</span>Well the only problem is, it doesn’t matter at all how big it is,
anything, any tiny spot means the chemo didn’t work.<span style="mso-spacerun: yes;"> </span>The only way they know how to treat
Osteosarcoma, DIDN’T WORK!<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">By this time I had fallen to the floor sobbing, we both were…
I can’t tell you how long I sat there crying probably harder, no like way
harder, then I cried 1 year ago.<span style="mso-spacerun: yes;"> </span>At one
point I don’t think I was breathing and then my face and arms started going
numb.<span style="mso-spacerun: yes;"> </span>That was all I could get out to
Jonathan as he tries to decide if he should be taking me to the hospital for a
change.<span style="mso-spacerun: yes;"> </span>As his concern moved to my wellbeing,
I think some sort of brain function returned and I started telling myself out
loud “Breathe, you have to Breathe.”<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Once I was coherent, the questions started coming.<span style="mso-spacerun: yes;"> </span>Word for word what did the Dr say?<span style="mso-spacerun: yes;"> </span>OK so we need a biopsy, give me the phone, I’m
called Chappie NOW!<span style="mso-spacerun: yes;"> </span>Somehow Dr. Chappie
answered his phone, and I told him what was happening.<span style="mso-spacerun: yes;"> </span>He told me his surgeries are on Thursday and
he will try to fit him in.<span style="mso-spacerun: yes;"> </span>Call at 8am
Monday morning and we will get it figured out!<span style="mso-spacerun: yes;">
</span>Then he asked if there was anything on his lungs… and in my frustration
I said 1 month ago there wasn’t anything on his pelvis, so I have no flipping
clue if this is to his lungs yet.<span style="mso-spacerun: yes;"> </span>It
grew to the size of a golf ball in a month!<span style="mso-spacerun: yes;">
</span>He says, well if it isn’t in his lungs yet, that’s some sort of good
news… Call me first thing Monday.<span style="mso-spacerun: yes;"> </span>And we
hung up.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Next Surgeon, there is the local one here in Spokane, Dr.
Howlett.<span style="mso-spacerun: yes;"> </span>Chappie trained him and well he
caught this entire mess in the first place.<span style="mso-spacerun: yes;">
</span>Lets call him… So we got an appointment on Tuesday.<span style="mso-spacerun: yes;"> </span>Not sure it makes much of a difference who
does the biopsy, and if a day or 2 matter in the time frame.<span style="mso-spacerun: yes;"> </span>Ultimately we know what it is… but they will
want the biopsy to begin genetic testing on.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I began to call family, as Jonathan sat on the computer
researching.<span style="mso-spacerun: yes;"> </span>I didn’t have to research…
I knew the odds were now very much not in our favor.<span style="mso-spacerun: yes;"> </span>I knew the 2 oncologist both answered my
question totally different when I asked “do you have a plan if this comes back?”<span style="mso-spacerun: yes;"> </span>And the answer is, they don’t know what to do,
and are each guessing.<span style="mso-spacerun: yes;"> </span>There is no
standard of treatment anymore.<span style="mso-spacerun: yes;"> </span>One
proposed a different types of chemo that shows maybe some promise.<span style="mso-spacerun: yes;"> </span>(AKA buy more time, time that we know is sick
and miserable.<span style="mso-spacerun: yes;"> </span>AND pray for a miracle.)<span style="mso-spacerun: yes;"> </span>The other suggested medical trials.<span style="mso-spacerun: yes;"> </span>No statistical proof of anything, a long
shot!<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>Now, we have no good options!<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Jonathan found a T Cell trial at Duke and Penn State.<span style="mso-spacerun: yes;"> </span>So we will see what the doctors tell us, and
if we need to pick up and move to North Carolina. <span style="mso-spacerun: yes;"> </span>But here is what Jonathan told me.<span style="mso-spacerun: yes;"> </span><b style="mso-bidi-font-weight: normal;">He isn’t
quitting!</b><span style="mso-spacerun: yes;"> </span>He has way too much to
live for, and hey, his odds are better than Sean’s.<span style="mso-spacerun: yes;"> </span>(The speaker we have coming to the dinner and
auction)<span style="mso-spacerun: yes;"> </span>So his positive spirit is in
there… it is just really hard to be positive YET!<span style="mso-spacerun: yes;"> </span>I know we will formulate a plan and we will
go at this all over again, but it is hard to be positive when you are so
devastated at the same time.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">So we put on a happy face, let Jax have his friend come
spend the night, then packed a swim suite, tooth brush and pajamas and hit the
road for Priest Lake first thing the next morning.<span style="mso-spacerun: yes;"> </span>We promised the kids daddy would take them to
the lake, they love it here (so do we), and how in the world were we going to
tell them? <span style="mso-spacerun: yes;"> </span>So tonight we sat down around
the table for dinner and Jonathan told them that daddy thinks the bad guys are
back.<span style="mso-spacerun: yes;"> </span>Jax got mad sort of and was immediately
frustrated.<span style="mso-spacerun: yes;"> </span>I told him I was really sad
and it was ok for him to be sad.<span style="mso-spacerun: yes;"> </span>So he
then started crying, but just for a minute before he reminded us that the bad
guys don’t like it if we are happy.<span style="mso-spacerun: yes;"> </span>So
we need to try to be happy!<span style="mso-spacerun: yes;"> </span>Jude kind of
seemed confused, and just sat there quite.<span style="mso-spacerun: yes;">
</span>He then started asking questions, Does this mean we have to go to the
hospital all the time AGAIN?<span style="mso-spacerun: yes;"> </span>Is daddy
going to be sick AGAIN?<span style="mso-spacerun: yes;"> </span>Jax asked if we
are moving to Florida… So we did tell them we very likely will have to
move.<span style="mso-spacerun: yes;"> </span>So they are working on processing
this and are trying to be brave.<span style="mso-spacerun: yes;"> </span>As
brave as any 3 & 5 year old could be!<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">We spent the weekend hiding from world and making the most
of the time we all have together.<span style="mso-spacerun: yes;"> </span>Jax
caught a fish off the dock, the boys got Jonathan on the tube for a nice little
ride and we tried to enjoy our most favorite place the best we could.<span style="mso-spacerun: yes;"> </span>We even mustered up the courage to travel
across the lake to have a drink with some friends.<span style="mso-spacerun: yes;"> </span>We both know from last time it is better to
crawl out of your hole and face people.<span style="mso-spacerun: yes;">
</span>Allow yourself to be encouraged, but it just takes every ounce you have
to try to be normal for a minute.<span style="mso-spacerun: yes;"> </span>But
once we can do that, it does feel better…<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFyXf68_pYuzp3wvbKaslVFOkKcFIf39OjDB6PijUQ7j9AbrxJGtczw3oEpGtXy4OW8sfMT1hPTjPERDIQ-J0pHIBHgt-niaZNWZafr_xhRR4ZmatZMEup1SrEKWFascaAZXeQAQIrdI-N/s1600/July+19.1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFyXf68_pYuzp3wvbKaslVFOkKcFIf39OjDB6PijUQ7j9AbrxJGtczw3oEpGtXy4OW8sfMT1hPTjPERDIQ-J0pHIBHgt-niaZNWZafr_xhRR4ZmatZMEup1SrEKWFascaAZXeQAQIrdI-N/s320/July+19.1.jpg" width="240" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTEHyPbD_03dD3uVz7p39sGcHY9a4QIDr2Ej2l8vSL_QHZFgdDiJAExSy-CK1J1xnTuNNBkfxKtd0FhZoTpKUcyYSo41PzqiUt3N1pONm-32Apd2koVYs_gaGj_7NR4Bcrv0mCuqi78Uy-/s1600/July+19.2.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTEHyPbD_03dD3uVz7p39sGcHY9a4QIDr2Ej2l8vSL_QHZFgdDiJAExSy-CK1J1xnTuNNBkfxKtd0FhZoTpKUcyYSo41PzqiUt3N1pONm-32Apd2koVYs_gaGj_7NR4Bcrv0mCuqi78Uy-/s320/July+19.2.JPG" width="240" /></a></div>
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<span style="font-family: Calibri;"></span> </div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">So as we prepare to head out the door for church, I’m once
again going to ask for prayer.<span style="mso-spacerun: yes;"> </span>We are
virtually living a nightmare right now.<span style="mso-spacerun: yes;">
</span>Maybe by some miracle this spot isn’t what we think it is.<span style="mso-spacerun: yes;"> </span>But I will update the blog again when we know
more later this week.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.com6tag:blogger.com,1999:blog-1476216962773458117.post-63645459037719743322015-05-18T21:09:00.002-07:002015-05-18T21:09:18.789-07:00Life After Chemo
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXVAbkk4-bNteuYmCA3ulfFlPCH9dChVIEHAfUbNNxux6iDCn_H1vCppjUOrPucRQUfaEOBwLqoyH41yGN3uIGvWwImh8s_bjFHaDYpj1rpiyiOWLSzqja1IdPxkukopbz23epwKMpkv8D/s1600/vaca+10.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXVAbkk4-bNteuYmCA3ulfFlPCH9dChVIEHAfUbNNxux6iDCn_H1vCppjUOrPucRQUfaEOBwLqoyH41yGN3uIGvWwImh8s_bjFHaDYpj1rpiyiOWLSzqja1IdPxkukopbz23epwKMpkv8D/s320/vaca+10.JPG" width="320" /></a></div>
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<span style="font-family: "Times New Roman",serif; font-size: 10.5pt; line-height: 107%; mso-fareast-font-family: "Times New Roman";"></span> </div>
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<span style="font-family: "Times New Roman",serif; font-size: 10.5pt; line-height: 107%; mso-fareast-font-family: "Times New Roman";">I know it
has been awhile since Becky or I have updated everyone on how we are
doing.<span style="mso-spacerun: yes;"> </span>The truth is we have barely been
home to provide an update.<span style="mso-spacerun: yes;"> </span>I may have
over compensated for being stuck in a hospital room for the last 9 months!<span style="mso-spacerun: yes;"> </span>A few weekend trips, Portland, Oregon Coast,
Ephrata and the most fun was Hawaii!<span style="mso-spacerun: yes;"> </span>But
we actually did not sleep a weekend at home from March 27 until May 8<sup>th</sup>! I've really been enjoying my time out feeling almost normal.
<span style="mso-spacerun: yes;"> </span>Here are some Pictures:<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-YM6hLkx15_HvRPDlnjwnE20ayMA4vpcLN-OAEcrGvUeGfy64eOniEbaiJ6qw_rm2cywx1D_8V3Fjm597prp6EWt7sevTr2Wz6Irhd7mzJTRIjKxsqtxQUlLQWN6fCNrVGgzHv1bAUnvp/s1600/vaca+2a.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-YM6hLkx15_HvRPDlnjwnE20ayMA4vpcLN-OAEcrGvUeGfy64eOniEbaiJ6qw_rm2cywx1D_8V3Fjm597prp6EWt7sevTr2Wz6Irhd7mzJTRIjKxsqtxQUlLQWN6fCNrVGgzHv1bAUnvp/s320/vaca+2a.jpg" width="240" /></a></div>
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We are on the Oregon Coast</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmdd15K598oDfyrKGSlTq92cbxvYw2vKPjl5yACvRQTbxLJH-m1-wTt7ZYad5-jZqKx2mvNMiozPHF_OoJ11BNYZKazl0fW1Qxa2IXR-3xY8dTduWTF09R1CcYzNDxLllvDN6fa-j2qcI7/s1600/vaca+1a.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmdd15K598oDfyrKGSlTq92cbxvYw2vKPjl5yACvRQTbxLJH-m1-wTt7ZYad5-jZqKx2mvNMiozPHF_OoJ11BNYZKazl0fW1Qxa2IXR-3xY8dTduWTF09R1CcYzNDxLllvDN6fa-j2qcI7/s320/vaca+1a.jpg" width="320" /></a></div>
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The Boys go to the Seal Caves... It doesn't smell good!</div>
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4 Wheeling on the Beach in Oregon. (Thank you Uncle Frank and Aunt Linda)</div>
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First Day in Hawaii</div>
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I was able to paddle board... but it wasn't pretty</div>
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Family mini golf ocean side</div>
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The boys Loved the wild life</div>
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Jude made a goal to take a weird photo with Every statue in the resort</div>
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Grammy and Granpy took the boys to see the volcano. Jude loved to have the top down! </div>
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(very grateful they came to help with the kids!)</div>
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Went on a submarine. Becky got sick, but we saw a shark in a wrecked ship... Just like on Nemo!</div>
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The waves were too much for my leg... So this was the alternative!</div>
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Priceless </div>
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The boys LOVED swimming with the dolphins, but if you ask them about it, they will tell you they got the dolphin to fart!<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "Times New Roman",serif; font-size: 10.5pt; line-height: 107%; mso-fareast-font-family: "Times New Roman";">So here is
the good, the bad and the ugly of where we are today!<o:p></o:p></span></div>
<br />
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<span style="font-family: "Times New Roman",serif; font-size: 10.5pt; line-height: 107%; mso-fareast-font-family: "Times New Roman";">The good. </span></div>
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<span style="font-family: "Times New Roman",serif; font-size: 10.5pt; line-height: 107%; mso-fareast-font-family: "Times New Roman";">I feel
great!<span style="mso-spacerun: yes;"> </span>My energy is coming back more and
more each day.<span style="mso-spacerun: yes;"> </span>I was able to kick almost
all the medications right away that I was taking the last 9 months.<span style="mso-spacerun: yes;"> </span>My leg is getting stronger and seems to be
recovering much faster without having the chemo being pumped into me.</span></div>
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<span style="font-family: "Times New Roman",serif; font-size: 10.5pt; line-height: 107%; mso-fareast-font-family: "Times New Roman";">Becky gets
me to the gym almost daily, and I for some reason keep letting her drag me to
classes.<span style="mso-spacerun: yes;"> </span>Spin class a few times now and I
just did TRX class today…<span style="mso-spacerun: yes;"> </span>That’ll hurt
tomorrow!<span style="mso-spacerun: yes;"> </span>But we are enjoying our time
together and I know this is helping my leg get stronger, and hopefully
correcting my pulse and blood pressure.</span></div>
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<span style="font-family: "Times New Roman",serif; font-size: 10.5pt; line-height: 107%; mso-fareast-font-family: "Times New Roman";">I am playing
golf again and able to play 18 holes already!<span style="mso-spacerun: yes;">
</span>It isn’t easy but dragging my leg through the finish always feels
good.<span style="mso-spacerun: yes;"> </span>My game is nowhere close to where
is used to be.<span style="mso-spacerun: yes;"> </span>I have been asked several
times if it’s frustrating to play so much worse or different than before.<span style="mso-spacerun: yes;"> </span>My answer is simple and honest, “I’m above
ground and playing golf, so no it’s not frustrating.”<span style="mso-spacerun: yes;"> </span>Neither of those was a guarantee 10 months
ago and isn’t a guarantee forever.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "Times New Roman",serif; font-size: 10.5pt; line-height: 107%; mso-fareast-font-family: "Times New Roman";">I am loving
being home with Becky and the boys.<span style="mso-spacerun: yes;">
</span>Getting to take Jax to school, doing puzzles, Legos or taking Jax to the
golf course.<span style="mso-spacerun: yes;"> </span>Hanging out with Jude for
our morning coffee is amazing.<span style="mso-spacerun: yes;"> </span>I felt
like I missed out on a lot of this and am so happy to be able to make up for
lost time before going back to work.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
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<span style="font-family: "Times New Roman",serif; font-size: 10.5pt; line-height: 107%; mso-fareast-font-family: "Times New Roman";">The
bad.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "Times New Roman",serif; font-size: 10.5pt; line-height: 107%; mso-fareast-font-family: "Times New Roman";">My new right
leg is an inch shorted than it is supposed to be…<span style="mso-spacerun: yes;"> </span>Seems like there would be a more precise way
to go about these surgeries but I am told this is normal.<span style="mso-spacerun: yes;"> </span>The device did move 1 CM higher post-surgery
too.<span style="mso-spacerun: yes;"> </span>The difference in length makes it
hard to walk without a limp.<span style="mso-spacerun: yes;"> </span>Trying to
fix this with orthotics and heel lifts without having to rock giant shoes…<span style="mso-spacerun: yes;"> </span>The difference plus the week right leg is
also now playing havoc on my hips and lower back on the strong side.<span style="mso-spacerun: yes;"> </span>It is really painful to sit for more than an
hour or so, and sometimes just a few minutes can cause a lot of
discomfort.<span style="mso-spacerun: yes;"> </span>I’ve been attempting massage
and now chiropractic care to see if the pain will dissipate as things get
straightened out.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "Times New Roman",serif; font-size: 10.5pt; line-height: 107%; mso-fareast-font-family: "Times New Roman";">Continued neuropathy
in my hands and feet.<span style="mso-spacerun: yes;"> </span>They have a
tingling or numb feel almost all the time.<span style="mso-spacerun: yes;">
</span>The pain and extreme temperature feelings has gotten much better.<span style="mso-spacerun: yes;"> </span>Regular acupuncture has helped (I think),
plus time away from chemo.</span></div>
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<span style="font-family: "Times New Roman",serif; font-size: 10.5pt; line-height: 107%; mso-fareast-font-family: "Times New Roman";">I am still
going to a lot of doctor and therapy appointments to try and help with all the
random side effects and recovery.<span style="mso-spacerun: yes;"> </span>Detox
from chemo can take months and some side effects can last years…<span style="mso-spacerun: yes;"> </span>But I would still much rather have some side
effects than have any more chemo days!<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman",serif; font-size: 10.5pt; line-height: 107%; mso-fareast-font-family: "Times New Roman";">The ugly.</span></div>
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<span style="font-family: "Times New Roman",serif; font-size: 10.5pt; line-height: 107%; mso-fareast-font-family: "Times New Roman";">We know the
very real and scary risk of reoccurrence.<span style="mso-spacerun: yes;">
</span>Depending on the person you ask or study you read the chance of return
is between 30-50%.<span style="mso-spacerun: yes;"> </span>And it’s really bad
if it does return.<span style="mso-spacerun: yes;"> </span>We know the only way
doctors know how to treat my cancer didn’t work.<span style="mso-spacerun: yes;"> </span>So we become those medical trial people that…
well you get the idea.<span style="mso-spacerun: yes;"> </span>This scary truth
is what we will live with for the rest of our lives especially the first 5
years.<span style="mso-spacerun: yes;"> </span>I have another scan coming up end
of June.<span style="mso-spacerun: yes;"> </span>Prayers that this is another
clear scan are appreciated.<span style="mso-spacerun: yes;"> </span>We know God
has a plan and we pray that the plan was for me to beat cancer the first try.<span style="mso-spacerun: yes;"> </span>If not we will continue to fight!</span></div>
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<span style="font-family: "Times New Roman",serif; font-size: 10.5pt; line-height: 107%; mso-fareast-font-family: "Times New Roman";">The other
part of this reoccurrence risk is that every time a muscle aches or a joint
hurts or anything else that is completely normal happens, you think the cancer
may be back.<span style="mso-spacerun: yes;"> </span>This is a ridiculous
feeling to have but is one I have…<span style="mso-spacerun: yes;"> </span>and
have a lot because my body is going through so much repair and adjustments that
my joints and muscles always hurt!<span style="mso-spacerun: yes;"> </span>We
are trying to learn how to live not in fear, but the truth is, we aren’t doing
great at it.<span style="mso-spacerun: yes;"> </span>Becky has been having
nightmares and wakes up in panic mode that I’m dead and I’m calling to ask
doctors to scan me again because I have a sore glut!<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "Times New Roman",serif; font-size: 10.5pt; line-height: 107%; mso-fareast-font-family: "Times New Roman";">I’m starting
to get people asking me on a regular basis when I’m coming back to work.<span style="mso-spacerun: yes;"> </span>This is a hard question for me… Going back to
work right now would mean it is part time.<span style="mso-spacerun: yes;">
</span>I’m seeing some form of a rehab doctor every day.<span style="mso-spacerun: yes;"> </span>Because I’m a commission employee, this would
be difficult to pull off, and probably not fair to Scott.<span style="mso-spacerun: yes;"> </span>(Although I know he doesn’t care and wants me
back ASAP)<span style="mso-spacerun: yes;"> </span>But my other reality is that
50%...<span style="mso-spacerun: yes;"> </span>These first few months of scans
are crucial and often reoccurrence happens in the first year.<span style="mso-spacerun: yes;"> </span>I’ve missed the last year with my family and now
that I feel like I have no idea what is in my future, I’m spending my time in
the most important place as long as I can.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "Times New Roman",serif; font-size: 10.5pt; line-height: 107%; mso-fareast-font-family: "Times New Roman";">In other
news:</span></div>
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<span style="font-family: "Times New Roman",serif; font-size: 10.5pt; line-height: 107%; mso-fareast-font-family: "Times New Roman";">Our
fundraising efforts (and by our, I mean Becky’s) are going great.<span style="mso-spacerun: yes;"> </span>I am busy goofing off and playing with the
boys but Becky has been amazing.<span style="mso-spacerun: yes;"> </span>We both
feel very passionately about the non-profit and the good work we will be able
to do from it.<span style="mso-spacerun: yes;"> </span>We have raised (Or have
commitments for) over $50,000 of our $100,000 goal for this year and still have
the event on Sept 12 to raise more money.<span style="mso-spacerun: yes;">
</span></span></div>
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<span style="font-family: "Times New Roman",serif; font-size: 10.5pt; line-height: 107%; mso-fareast-font-family: "Times New Roman";">We are
already scheming about next year and finding needs that can be filled around
every corner.<span style="mso-spacerun: yes;"> </span>Honestly helping others
has been the best distraction for both Becky and myself.<span style="mso-spacerun: yes;"> </span>It feels good to feel like you can help
someone else experiencing the same hell we did.<span style="mso-spacerun: yes;">
</span></span></div>
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<span style="font-family: "Times New Roman",serif; font-size: 10.5pt; line-height: 107%; mso-fareast-font-family: "Times New Roman";">September is
going to be here before you know it.<span style="mso-spacerun: yes;"> </span>We
are starting to try to figure out numbers etc.<span style="mso-spacerun: yes;">
</span>So if you plan on playing in the golf tournament or coming to the dinner
and auction, Please go register and get that taken care of.<span style="mso-spacerun: yes;"> </span>We are very confident the dinner tickets are
going to sell out (we have a max occupancy) so you don’t want to wait on those!<span style="mso-spacerun: yes;"> </span>We are really excited how everything is
coming together and are excited for everyone to come.<o:p></o:p></span></div>
<br />
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<span style="font-family: "Times New Roman",serif; font-size: 10.5pt; line-height: 107%; mso-fareast-font-family: "Times New Roman";">Purchase a
Shirt - <a href="https://cancercant.itemorder.com/sale" rel="nofollow" target="_blank"><span style="font-size: small;">https://cancercant.itemorder.com/sale</span></a><o:p></o:p></span></div>
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Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.com2tag:blogger.com,1999:blog-1476216962773458117.post-45107596739436801122015-03-24T22:05:00.000-07:002015-03-24T22:05:02.452-07:00We Did It! Last Chemo DayI had a neighbor pull over this weekend as I was doing yard work to tell me she was looking at the blog almost daily waiting to hear the scan results! I guess after I posted it to Facebook I totally forgot I needed to fill in all our blog followers. It made me so happy to see her face light up when I told her our great news... HIS SCAN WAS CLEAR! So tonight I sit down and write, as Jonathan is at the hospital, probably taking his very last drop of chemo as we speak.<br />
<br />
I almost can't even describe our feelings over the last couple of weeks. This last year has been one hell of a wild ride for our entire family. When Jonathan told me Dr. Raj called and his scan was clear, I actually jumped on the bed and started dancing! Jonathan laughed at me, but I think if he could jump he would have joined me. But after that initial excitement, we realized we still had 2 more rounds to finish and that pure joy hasn't quite yet returned. I'm hoping as we wrap up the chemo, and the side effects start to dissipate, our joy will continue to grow. We have been much happier these last couple weeks, but I guess it's hard to be "over the moon" when Jonathan is still having to deal with all the side effects of chemo. Maybe that's why we aren't feeling like one would expect? But don't worry, the therapist said we are both still normal. <br />
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<div style="text-align: center;">
(Our family photo as daddy was getting his last round of chemo!)</div>
<div style="text-align: center;">
</div>
So today was Jonathan's last day of chemotherapy! It turned out to be kind of an interesting day... Similar to the very first day we checked in for chemo, there was no bed for him. This time we know the nurses and decided to check ourselves into the family room on the 7th floor instead of wait on the 9th floor. So we hung out with strangers and they started Jonathan on his IV in the waiting room. We met another very nice young family who's daddy/husband has multiple myeloma. This very young girl had her first experience calling 911 the night before as her daddy was bleeding profusely from his hickman, just like Jonathan has. His chemo isn't working! I think these girls were maybe 7 and 9 with a mom not much older than Jon and I. She told us we made her day that she got to meet someone that beat it, and we got to share with her what today feels like. So as I'm suppose to sit here and write about how awesome today is, I can't stop crying for this family. This is what we see every day in that hospital, and being that family is still my worse fear. Maybe that's why we can't actually feel so "over the moon" excited. This is so very real to us. And if it isn't us, we have a very real understanding that it is happening to someone else. <br />
<br />
But we also got to learn what a true gift we have been given, and we plan on making the most of every second we have together as a family, before Jonathan goes back to work. If the Doc gives us the green light we may take a road trip over the boy's spring break just the 4 of us. Then shortly after that we are going to head to Hawaii for a week to fulfill a promise to the kids on that vacation to the ocean. It's about 1 summer late, and we are beyond ready to escape from life for a few days and just relax with no worries or stress about doctors, chemo, chores, etc. I'm certain when we get there, that pure joy feeling will be back! It really means that this is over.<br />
<br />
I'm going to leave you with Jax's prayer from tonight. "Jesus, thank you that tomorrow daddy gets the tubes out of his chest. He is really excited about that. And Jesus, thank you for listening to my prayers and helping dr. Raj take away daddy's Cancer. You have magic! Please help me have no bad dreams tonight. Amen!"<br />
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(Thank you to the nurses from the bottom of our hearts for everything you have done to help Jonathan over the last 9 months. You are an incredible crew that has allowed Jonathan to keep his sense of humor and helped him make the best of something not so awesome! You are a gift from God! Trust me, I understand why you have started taking his blood pressure around his neck!)Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.com0tag:blogger.com,1999:blog-1476216962773458117.post-49531846374377794412015-03-03T23:14:00.003-08:002015-03-03T23:14:42.767-08:00Requesting Prayer, Very Big Day Ahead
<br />
I'm sitting down on the eve of my 30th birthday to update you all on a very
big couple of days that lay ahead of us.<span style="mso-spacerun: yes;">
</span>I think at this point in most people’s lives they take some time to
reflect on their last 30 years.<span style="mso-spacerun: yes;"> </span>I think
some people get a little depressed because maybe they aren’t where they
expected to be by 30.<span style="mso-spacerun: yes;"> </span>Their career didn’t
pan out the way they wanted, maybe they aren’t married with kids.<span style="mso-spacerun: yes;"> </span>Or maybe just the opposite.<span style="mso-spacerun: yes;"> </span>Maybe everything came together for you just
how you planned.<span style="mso-spacerun: yes;"> </span>So you begin to plan
your next 30 years.<span style="mso-spacerun: yes;"> </span>I have no idea what
turning 30 feels like, I haven’t honestly even thought about it…<o:p></o:p><br />
<br />
Tomorrow, on my 30<sup>th</sup> birthday, Jonathan will be getting a PET
scan.<span style="mso-spacerun: yes;"> </span>A day I’ve been dreading for
months now.<span style="mso-spacerun: yes;"> </span>By Friday we will know our
fate.<span style="mso-spacerun: yes;"> </span>Are we back to square 1 and we
start this all over again, or can Jonathan begin to recover and life can maybe
be something that resembles life before cancer.<span style="mso-spacerun: yes;">
</span>Unlike life one year ago, we now can only plan life in 3 month increments.<span style="mso-spacerun: yes;"> </span>We plan life until his next PET scan.<span style="mso-spacerun: yes;"> </span><o:p></o:p><br />
<br />
I feel confident that everything will come back clean and we can finish his
last 2 rounds in March and then begin to recover from the last year.<span style="mso-spacerun: yes;"> </span>But no matter how confident anyone can be
even just the tiniest possibility that you could get bad news is crippling.<span style="mso-spacerun: yes;"> </span>The fear is crippling.<span style="mso-spacerun: yes;"> </span>We’ve been telling the kids for the last couple
weeks now that daddy just has a couple more hospital trips and he we be all
better.<span style="mso-spacerun: yes;"> </span>He will start to feel
better.<span style="mso-spacerun: yes;"> </span>What if I’m a liar?<span style="mso-spacerun: yes;"> </span>Tonight I know Jax knew the magnitude of his
prayer as he prayed for daddy’s scan.<span style="mso-spacerun: yes;">
</span>Lately daddy getting better has seemed as redundant as “and thank you
for all our blessings, Amen.”<span style="mso-spacerun: yes;"> </span>But
tonight I watched him wipe a tear from his eye as he asked God for a good scan,
No more Cancer, No more chemo, and for daddy to take him to play golf
again.<span style="mso-spacerun: yes;"> </span><o:p></o:p><br />
<br />
Our Dr. even expressed his own anxiety over Jonathan’s scans.<span style="mso-spacerun: yes;"> </span>I can’t even imagine doing his job to tell
you the truth. <span style="mso-spacerun: yes;"> </span>The possibility of giving
people bad news like that… He began to explain how some patients are harder
than others.<span style="mso-spacerun: yes;"> </span>Some you begin to get
attached to.<span style="mso-spacerun: yes;"> </span>He told us Jonathan’s scan
have to come back clear for his own sanity.<o:p></o:p><br />
<br />
Over the last few days my mind has begun to wonder, did I pray enough?<span style="mso-spacerun: yes;"> </span>Have I been listening and doing what I’m supposed
to be doing?<span style="mso-spacerun: yes;"> </span>Have I learned what the
point of all of this was?<span style="mso-spacerun: yes;"> </span>Jonathan’s mom
and I joked around about this recently, I would have listened to a burning
bush!<span style="mso-spacerun: yes;"> </span>As if anything I can do will
change the outcome.<span style="mso-spacerun: yes;"> </span>I know it won’t, but
the thought is human nature I’m sure.<span style="mso-spacerun: yes;"> </span><o:p></o:p><br />
<br />
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So tonight my blog is going to be rather short.<span style="mso-spacerun: yes;"> </span>But I appeal to you to please keep our family
in your prayers for the next few days.<span style="mso-spacerun: yes;">
</span>We really need Jonathan’s scan to come back clean.<span style="mso-spacerun: yes;"> </span>We are both trying to so hard to be positive,
and to handle this with every ounce of grace God sends our way.<span style="mso-spacerun: yes;"> </span>But the truth is we are very ready for this
nightmare to end for us. I would much rather focus my extra energy helping others through their nightmare!<span style="mso-spacerun: yes;"> </span>Thank you for taking a
moment to pray for us.<br />
<o:p></o:p><br />
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Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.com3tag:blogger.com,1999:blog-1476216962773458117.post-48653590044663695352015-02-18T13:55:00.001-08:002015-02-18T13:55:05.688-08:00Another Treat: A post from Jonathan
<span style="font-family: Calibri;">I am writing this
at 4am from the hospital, finished chemo about 8 hours ago so I apologize for
grammar issues #chemobrain.<span style="mso-spacerun: yes;"> </span>I am
finishing round 2 of 3 for February!<span style="mso-spacerun: yes;"> </span>So
far easy goes.<span style="mso-spacerun: yes;"> </span>Next week will be short
week just 2 days in the hospital.<span style="mso-spacerun: yes;"> </span>After February
I will have completed around 30 rounds of chemo and over 80 days in the
hospital!<span style="mso-spacerun: yes;"> </span>I have around 10 days left in
March and that completes the cycle!<span style="mso-spacerun: yes;"> </span>Then
we are looking forward to Hawaii with some family and friends!<span style="mso-spacerun: yes;"> </span>A much deserved vacation for everyone who has
been taking care of me!<o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Once March is down possibly the scariest part begins…<span style="mso-spacerun: yes;"> </span>Don’t get me wrong learning you have cancer
is scary but you learn to deal.<span style="mso-spacerun: yes;"> </span>You
start thinking about what to learn from this, what we can do with this, how we
can beat this.<span style="mso-spacerun: yes;"> </span>Once you’re down with the
treatments you are supposed to go back to normal.<span style="mso-spacerun: yes;"> </span>But with my cancer I have a 50% chance of
recurrence in the next 5 years!<span style="mso-spacerun: yes;"> </span>A rescan
every 6 months hoping and praying this beast doesn’t come back.<span style="mso-spacerun: yes;"> </span>Always looking over your shoulder.<span style="mso-spacerun: yes;"> </span>It is really scary to know you have that
lurking.<span style="mso-spacerun: yes;"> </span>I guess you just try to live as
normal as possible.<span style="mso-spacerun: yes;"> </span>I know I will
appreciate everyday a lot more.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">What is cancer to you…<span style="mso-tab-count: 1;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Becky and I were doing the KHQ interview last week and
Stephanie Vigil asked us the question, “What is cancer to you”…<span style="mso-spacerun: yes;"> </span>Whoa, that one threw us.<span style="mso-spacerun: yes;"> </span>My answer to her was it is just an “awful
disease”, that was literally all my mouth and brain could come up with.<span style="mso-spacerun: yes;"> </span>Hey nice work brain!<span style="mso-spacerun: yes;"> </span>The good news is my mouth just repeated it
again and again.<span style="mso-spacerun: yes;"> </span>I don’t know what Becky
said because I was trying to restart my brain and stop my mouth from repeating
that again.<span style="mso-spacerun: yes;"> </span>I am sure Becky’s answer was
better but she didn’t think so.<span style="mso-spacerun: yes;"> </span>It kept
us both up at night trying to think about this.<span style="mso-spacerun: yes;">
</span>Which may be why I am writing this at 4am.<span style="mso-spacerun: yes;"> </span>Hopefully my brain helps me out a little more
this time!<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Cancer is a journey.<span style="mso-spacerun: yes;">
</span>It is a shock, a gut wrenching “why is this happening” when you learn
the news.<span style="mso-spacerun: yes;"> </span>It becomes your every thought
and concern.<span style="mso-spacerun: yes;"> </span>Your waking thought, your
going to sleep thought.<span style="mso-spacerun: yes;"> </span>You try not to
neglect everything else around you but can’t help it.<span style="mso-spacerun: yes;"> </span>The doctors, the pain, the scans are all this
reminder daily that you have cancer.<span style="mso-spacerun: yes;">
</span>Then it becomes a mission.<span style="mso-spacerun: yes;"> </span>You start
doing anything and everything to beat it.<span style="mso-spacerun: yes;">
</span>In your mind you know it can kill you but I started to have to put faith
in God that he can beat it.<span style="mso-spacerun: yes;"> </span>He gave us
the medicines and doctors to help us beat it.<span style="mso-spacerun: yes;">
</span>Then its days and days of hospitals…<span style="mso-spacerun: yes;">
</span>which can be long and boring and depressing at times.<span style="mso-spacerun: yes;"> </span>I have tried to make them fun at times.<span style="mso-spacerun: yes;"> </span>Like skateboarding down the halls (highly
frowned upon!).<span style="mso-spacerun: yes;"> </span>I may even try some fake
blood pranks this week on the newbie’s.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">But I think I look back and can say cancer was a blessing…<span style="mso-spacerun: yes;"> </span>as the boys would say, “Wait What” (thanks
for that Frozen!).<span style="mso-spacerun: yes;"> </span>I think we have
developed stronger relationships, friendships and a marriage from this.<span style="mso-spacerun: yes;"> </span>There have been countless blessings from so
many people, some were close friends before, some complete strangers who are
now friends.<span style="mso-spacerun: yes;"> </span>I can’t even begin to say how
surprised I am by the support we have gotten.<span style="mso-spacerun: yes;">
</span>I need to throw out a quick shout out to some of those.<span style="mso-spacerun: yes;"> </span>Becky you are my rock daily, you have been
here almost all 8o days that I have been as well as the days at home that are
worse than the hospital days.<span style="mso-spacerun: yes;"> </span>And keep
me upright and on course when the course looks too hard. <span style="mso-spacerun: yes;"> </span>Scott & Heidi Rudy you have been here more
than anyone except Becky.<span style="mso-spacerun: yes;"> </span>Thank you for
catering to my weird food cravings of teriyaki chicken and sweet potato fries.<span style="mso-spacerun: yes;"> </span>Danny Pecka for letting me beat him every
time at Tiger Woods!<span style="mso-spacerun: yes;"> </span>And calling to
check on me all the time, along with Stu Smith.<span style="mso-spacerun: yes;">
</span>My dad, my mom, Becky’s parents who take the kids on a moments notice.<span style="mso-spacerun: yes;"> </span>Carrie Everman and Ryan Pettibone.<span style="mso-spacerun: yes;"> </span>Our neighbors.<span style="mso-spacerun: yes;"> </span>The Spokane Club Family, what a great group
of people Becky has met! And all the people who have brought dinners, or stayed
weeks with our kids while we are here, several have driven or flown 6+ hours
from Oregon or the west side to be here. <span style="mso-spacerun: yes;"> </span>I am sorry if I forgot anyone these are the
people on my mind and heart, and again I have Chemo Brain.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I wish it didn’t have to be such a terrible way to get such
a much needed lesson in life.<span style="mso-spacerun: yes;"> </span>Cancer may
be terrible but I will forever cherish friendships more.<span style="mso-spacerun: yes;"> </span>I used to be so driven by success and still
am.<span style="mso-spacerun: yes;"> </span>I guess my overall definition has
changed.<span style="mso-spacerun: yes;"> </span>The savings account doesn’t need
to be so full all the time.<span style="mso-spacerun: yes;"> </span>An extra
vacation with the kids wouldn’t be such a bad idea.<span style="mso-spacerun: yes;"> </span>My success revolves a lot more around my
faith, family and relationship.<span style="mso-spacerun: yes;"> </span>The work
success will follow.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">So what is cancer, one of the scariest rollers coasters you
will ever ride.<span style="mso-spacerun: yes;"> </span>And it keeps going thru
the ups and downs.<span style="mso-spacerun: yes;"> </span>The downs get better
and easier but they are always going to be there.<span style="mso-spacerun: yes;"> </span>The ups are higher than you can imagine.<span style="mso-spacerun: yes;"> </span>The turns are jarring but you learn to brace
for them and can handle them easier.<span style="mso-spacerun: yes;"> </span>I
will forever be on this ride but it has made me a stronger man, and hopefully a
better husband, father and friend.<span style="mso-spacerun: yes;"> </span>(ps. I
hate roller coasters.<span style="mso-spacerun: yes;"> </span>Won’t catch me on
one at silverwood any time soon!)<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I am going to sign off here.<span style="mso-spacerun: yes;">
</span>Best to let you know so when the grammar and quality improve you won’t
be surprised!<span style="mso-spacerun: yes;"> </span>Becky will add an update
on Cancer Can’t.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I love it when Jonathan gets a wild hair, or can’t sleep.<span style="mso-spacerun: yes;"> </span>Lots of things get done!<span style="mso-spacerun: yes;"> </span>I also really enjoy reading stuff he writes.<span style="mso-spacerun: yes;"> </span>Sorry I haven’t written a blog update in a
while.<span style="mso-spacerun: yes;"> </span>Things just have begun to seem so
normal and I feel like I have a lack of interesting things to write about.<span style="mso-spacerun: yes;"> </span>The last few weeks have started to become
rather busy though.<span style="mso-spacerun: yes;"> </span>After announcing
that Jonathan had decided to start a nonprofit we got busy moving full speed
ahead.<span style="mso-spacerun: yes;"> </span>We’ve begun working with
Providence planning and budgeting. <span style="mso-spacerun: yes;"> </span>We
had to form a board of directors, file our 501c3 paperwork. <span style="mso-spacerun: yes;"> </span>We are diligently working to contact businesses
to ask for sponsorships and auction donations.<span style="mso-spacerun: yes;">
</span>Then, Stephanie Vigil from KHQ got word of what Jonathan was working on
and then all of the sudden we are going on the news!<span style="mso-spacerun: yes;"> </span>Really, we are very excited that this seems
to be getting wings of its own.<span style="mso-spacerun: yes;"> </span>We
really hope we can make a difference and this project is successful.<span style="mso-spacerun: yes;"> </span>If we can help just a few people, it’s all
worth it!<span style="mso-spacerun: yes;"> </span>Honestly, focusing on
something so positive has really been good for the both of us.<span style="mso-spacerun: yes;"> </span>We are taking far less time feeling bad for
ourselves and using that time to focus on doing something good.<span style="mso-spacerun: yes;"> </span>It is working out well.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">We have made some changes to our website.<span style="mso-spacerun: yes;"> </span>You can now donate through PayPal on the
website.<span style="mso-spacerun: yes;"> </span>So if you feel inclined to
support this project, please go to </span><a href="http://www.cancercant.info/"><span style="color: #0563c1; font-family: Calibri;">www.cancercant.info</span></a><span style="font-family: Calibri;">.<span style="mso-spacerun: yes;"> </span>If you also know a business that would be interested
in sponsoring this event we would LOVE that!<span style="mso-spacerun: yes;">
</span>The KHQ story will be airing tonight, so tune into that as well!<span style="mso-spacerun: yes;"> </span>We hope to see you in Spokane at the golf
tournament, or if you aren’t a golfer, just come for dinner!<span style="mso-spacerun: yes;"> </span>It will be an amazing night!<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I also want to take a moment to give a shout out to my
cousin Tanner.<span style="mso-spacerun: yes;"> </span>He is a fire fighter over
in Oregon.<span style="mso-spacerun: yes;"> </span>Over the last 2 years he has
done the Firefighter Stair Climb in support of Leukemia and Lymphoma.<span style="mso-spacerun: yes;"> </span>Typically each fighter does their climb in
honor of someone battling cancer.<span style="mso-spacerun: yes;">
</span>Jonathan is so honored that this year, Tanner is climbing in honor of
Jonathan.<span style="mso-spacerun: yes;"> </span>I don’t know if many of you
have climbed a significant amount of stairs recently, but I did the stair
climber at the gym last week just to see.<span style="mso-spacerun: yes;">
</span>This is a serious thing, which possibly would kill me!<span style="mso-spacerun: yes;"> </span>This guy is going to climb 69 flights of
stairs as fast as he can.<span style="mso-spacerun: yes;"> </span>Oh and that
isn’t it… He will be in all of his fire equipment.<span style="mso-spacerun: yes;"> </span>I’m guessing that adds at least 30-40 pounds
because that includes his oxygen tank.<span style="mso-spacerun: yes;"> </span>I
would certainly run out of oxygen.<span style="mso-spacerun: yes;"> </span>So I
also want to direct you to his website and ask if you are inclined to throw a
little support his way.<span style="mso-spacerun: yes;"> </span>What these
fireman do is an amazing thing and I have the utmost respect for them for even
attempting to do that!<span style="mso-spacerun: yes;"> </span>Check out his
website:<span style="mso-spacerun: yes;"> </span></span><span style="mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;"><br /><span style="font-family: Calibri;">
</span><a href="http://www.llswa.org/site/TR/Events/FirefighterStairclimb?px=1688892&pg=personal&fr_id=1453" target="_parent"><span style="color: #0563c1; font-family: Calibri;">http://www.llswa.org/site/TR/Events/FirefighterStairclimb?px=1688892&pg=personal&fr_id=1453</span></a><span style="font-family: Calibri;"><span style="color: #0563c1;"><!--EndFragment --></span>
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Thank you all so much for all your support of our family and all our little or maybe not so little projects. We really feel truly blessed to be surrounded by such wonderful people. We know Jonathan is really getting close to hopefully being done with his chemo treatment and we are beginning to see the light at the end of the tunnel. We are looking forward to getting back to life as we knew it, but are grateful that we have been forever changed. I wanted to include this picture, it is my favorite of Jonathan and the boys being outside doing the normal things we used to love doing. I can see this again in our near future.<br />
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Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.com1tag:blogger.com,1999:blog-1476216962773458117.post-53211815258262803382015-01-24T16:15:00.002-08:002015-01-24T16:59:21.234-08:00Cancer CantJonathan and I have some exciting news this week! Over the last couple weeks Jonathan and I have decided to focus our efforts on something positive. We have found it is so much easier to forget about what currently stinks in our life while we are so focused on doing something to make someone else have a little bit better circumstance. <br />
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We are proud to announce we are launching our own non profit! Cancer Cant<br />
Website: <a href="http://www.cancercant.info/">www.cancercant.info</a> <br />
Facebook: <a href="http://www.facebook.com/cancercant.info">www.facebook.com/cancercant.info</a> (Please Like our page)<br />
Twitter name: @cancercant_info (Please follow us)<br />
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It has been heavy on Jonathan's heart to do something about updating the oncology floor to make it more comfortable for patients staying there. As of today, Jonathan has spent more than 70 days in a hospital room. Some patients going through stem cell transplants can be in a hospital room for upwards of 50 consecutive days. Now imagine having basically no comforts of home. Hospital food constantly, because you have no refrigerator to keep take out or a home cooked meal cold. And then no way to warm it up. One of the more experienced nurses told him the oncology floor has not been updated/painted in over 20 years at Sacred Heart. So we have contacted Sacred heart and have begun the process to work with the directors to begin forming a budget and timeframe to help Jonathan's dream come true.<br />
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If you are interested in donating, volunteering, attending, whatever, please fill out the appropriate form on the website. This is going to be a huge project for us, but we are excited to see what we can make of it. We have 2-1/2 more months of considerable time in a hospital room, so we should be able to accomplish a lot!<br />
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Last update I sent out, we were waiting on biopsy results for some additional skin spots removed from Jonathan's back. Unfortunately he is going to have to have another minor surgery to remove 2 of the 4 spots. The good news is, the 2 spots requiring surgery are not full blown melanoma this time. They are however considered "severe A typical" and as I understand it, the stage just before it turns into cancer. So they basically treat it the same as a stage 1 spot. He will be having his little procedure mid march.<br />
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This week was a new adventure for Jonathan as he did not have to get what we call the "antichrist" of chemo. Typically he got that chemo simultaneously with a chemo by the name of "red devil". (We were informed of this nick name by a hospital roommate recently) So on Tuesday and Wednesday this week he got his regular dosage of the "red devil" and he handled it like a champ! The doctor let him out early on Wednesday so that was one less night in the hospital! On Thursday morning he went to physical therapy and picked Jax up from school. He seemed to feel really pretty good, but quickly got tired. He slept most of the rest of that day, and we started some minor anti nausea drugs, but overall he is doing great so far. We are expecting him to still become neutropenic next week, so this won't be a walk in the park. But so far it is going really well considering. <br />
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26 treatments down, with over 70 days in the hospital. 6 more treatments to go, and about 22 days in the hospital... assuming an infection doesn't land us there!<br />
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Now we have 2 weeks at home! We are excited to spend time with the kids and just relax. Oh and how about those Seahawks? Jonathan was screaming at the TV... more than usual last Sunday. I was afraid he was going to blow out his knee from attempting to jump up and down! He is very excited for the super bowl. <br />
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Jonathan and I found God challenging us after listening to pastor Joe's sermon on using your gifts to serve others. Joe said "If we are so focused on what we can't do, we will miss out on all the things we CAN DO." Life, our life was given to us by God, and was paid for at a price. We've had the opportunity, yes opportunity, to learn how short it can be. Someday each one of us is going to stand before God and have to answer for what we've done with our life and the gifts that he gave us. Like the parable in Mathew 25, God expects a return on his investment. <strong>Matthew 10:42</strong> "And if anyone gives even a cup of cold water to one of these little ones because he is my disciple, I tell you the truth, he will certainly not lose his reward." So we decided to move forward with Cancer Cant in hope to one day hear "well done, my good and faithful servants."<br />
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Cancer Cant, But we Can!Anonymoushttp://www.blogger.com/profile/04805467129206440692noreply@blogger.com0