Painful

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 10^th.  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.