We Celebrate 10 Years!

So I think it is about time for my once a week update on how things are going.  When I wrote last, Jonathan was just about hitting rock bottom after the first round of chemo.  This chemo stuff is really pretty horrible.  Jonathan spent most of the weekend and a good part of Monday pretty much curled up in a ball in bed, unable to open his eyes from extreme nausea, unable to eat or really put much in his mouth at all.  I was (or should say still am) pretty frustrated with the medications I was given to give to him.  It wasn't working... well maybe it was, he wasn't really throwing up, but the nausea was horribly uncontrolled.  I was given no back up meds as options when the first one wasn't working.  By Sunday afternoon Jonathan was down 6 lbs in 5 days.  This was torture for him, and me... watching him suffer is awful!  So this is my harsh reality that I need to be a better advocate for him and his care.  I need to be more prepared and push the doctors to give me what I need for the "what ifs".  

When learning about Jonathan's diagnoses, I read somewhere that 40% of cancer patients do not actually die from cancer itself, they die from the side effects of treatment.  It is becoming scary apparent that malnutrition is going to be our battle as he is now down 8 lbs in 8 days.  On Tuesday he was actually starting to eat again.  Jon's Aunt Tammy recommended home made mac and cheese (high calorie, and wet... he is suffering with horrible dry mouth) This was the first thing he ate an entire bowl of!  Trying to find foods that are high calorie, and not loaded with crap (sugar) that is feeding his cancer is a challenge.  I have given him ice cream at night just to get calories down him though.  He is starting to eat better now, but not the amount he was eating before this ordeal.  So even though he is eating, he isn't eating enough to gain weight back! 

As the days go by, Jonathan's nausea is really a ton better, but the leg pain that was almost gone, has returned.  I'm starting to wonder if they were giving him IV pain meds in the hospital that we were unaware of and that is actually why his leg was feeling better?  Another trouble he is having is that he is developing issues with his hearing... One of the side effects of chemo is high frequency hearing loss.  He isn't having trouble with that, but he says his hearing sounds super muffled and at times it is also really sensitive.  So I've scheduled an apt with an ENT dr. for Monday to explore what is going on with this!

I've gotten many texts wondering about "the spot" in his pelvis.  When I spoke to the dr. this week, I asked for a more detailed explanation.  I guess at times we all have certain spots where we get bone growth.  This is what they think the spot is.  He said it does not look cancerous at this time.  But they are going to continue to monitor it just to make sure that doesn't change. 

Yesterday, Jonathan and I celebrated our 10 year anniversary!  I have some really really amazing friends... A few weeks ago I was really struggling with what in the world we could do to celebrate when Jon can't really go out to eat, we can't go anywhere... So what's left?  My friends came up with a fantastic idea! 

 

We renewed our vows!  My girl friends did all the work planning and figuring out all the details for a small ceremony.  At about 4:30 I told Jonathan he couldn't leave the bedroom.  I was shocked at everything these girls put together.  So just before the ceremony started, I made my way upstairs and asked if he would Marry me.  (Luckily he said yes, or the next few hours would have been pretty awkward)

He was greeted down stairs by a small group of friends and an official ceremony.  Jax and Jude gave their mommy away, and Scott put together a very special little ceremony.  We had cake, fruit and a popcorn bar.  The girls even surprised me and got a real photographer... and just from her sneak peak photos, she did a great job.  It was the perfect way to celebrate 10 years!  He is going to have to do something really special at 20 years to top this.



The boys are coping with what is happening with daddy in their own ways.  Jax doesn't want to leave him and wants to hurry home whenever we do.  Jude who is a daddy's boy from day one, seems really cautious of daddy and is acting more like a mommy's boy now.  I'm trying to think of ways to help them feel involved and more comfortable.  So we taught them how to help and gave them the title of daddy's at home doctors.  This is a picture of the boys learning how to flush daddy's lines with heparin. 

They are really happy daddy is getting back to some normal daddy activities such as yelling at them for fighting... Oh wait, maybe I'm happy about that!  But they do love when daddy reads to them and plays board games.  All things daddy can do from bed. 

 

We are looking forward to this next week as Jonathan continues to feel better.  We are trying to plan some fun things that daddy can do before he is admitted back into the hospital on the 20th.

 

Many of you have been asking for the links to our other support sites.  Here is the link to the "Take them a Meal" page.  http://www.takethemameal.com/meals.php?t=QUFN4124&v=227183be69   I must say that on the days we have food delivered it is a huge blessing.  That is less time I have to take to go to the grocery store, cook, etc.  And we are able to eat off of left overs for a few days.  Thank you to everyone that has brought us a meal already.  It really is a huge help!

 

Here is a link to the fund me site that Jonathan's sister has set up.  http://www.gofundme.com/bxwja0   As I am learning about how all of our finances are going to pan out with COBRA, probationary waiting periods etc. this is just something that gives us a little peace of mind that if we need it, we aren't going to be in the red at the end of the month (or hopefully when this is all over!)  So thank you so much for those of you who have donated and supported us in this way. 

 

Jonathan's cousin Mary is working on a car wash the beginning of next month.  I've been getting lots of people contacting me about info on this.  I'm not sure how to link a FB event, but it is on Sept. 6th in Moses Lake, at C&V Auto from 9am - 6pm.  I know she need volunteers to help wash cars etc.  This is such a kind gesture of support and if you want to let Mary know you would like to help out, please email her at mary_davenport@live.com. 

 

We continue to be overwhelmed by how kind and generous so many people near and far are being to our family.  This is a huge reminder about how many good people there are out there.  We are so grateful for all of you. 

 

Thank you for all your prayers!