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.
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.
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!
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!
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!
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.
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.
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 10th. 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.
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.
No comments:
Post a Comment