Gallbladder

I posted partial updates on facebook, so now I'll do my best to get the full story on here.  Of course the full story is still only a partial story, but I'll try to remember all the main stuff.

John had 3 transfusions in a short amount of time.  Because of that, Dr. Wright said that he should stop his targeted therapy pills.  So John stopped those on Dec 10th.  The reason could have been that they weren't working  and the cancer was interfering with his blood production. Or the reason could have been that the pills were working but causing his blood counts to drop super low.  The reason didn't matter though because the transfusions were getting closer together.

During this time, we found out that Dr. Wright is leaving Huntsman in January.  We found that out basically the same time she decided John should stop his pills.

At this point, she decided on a new chemo regimen that would be 3 different drugs that he would get 1-3 of them every week. 

Because it takes so long to get new drugs approved through insurance, then I think this whole year as we started a new chemo, we went right to work getting the next option approved so that it would be approved by time we needed it.  This cancer grows very quickly and we don't feel comfortable with too much time in between chemos.  When he started the pills, though, it was close to the end of the year and our insurance was changing January 1, and scans were scheduled for mid-January.  So we told the staff who works on preauthorizing everything not to worry about preauthorizing until our new insurance was set up.  So now we are at the end of the year ready to start a new chemo and the whole preauthorize process hadn't even started.  So now we had people scrambling to try to get our current and our new insurance to approve the new drugs so that once John starts the new regimen, he can continue without delay.

So, Monday the 12th, that is what our situation looked like.

Tuesday we ended up at an eye doctor appointment because John's eye had been swollen for a few days.  He had pink eye so they said just wait it out.

Wednesday John felt pretty crummy.  And Thursday morning he went to do labs to see if he could get another transfusion. 

Scans originally scheduled for mid-January were moved to Thursday so that he could have scans before starting a new chemo.  He tried to get a transfusion while he was at the hospital for scans, but it didn't work out with the last minute timing.  So by now he had turned yellow and I was getting nervous because he was so sick and now yellow.

Friday morning he got a platelet transfusion and thought for sure he'd feel better within a few hours.  Instead he felt worse and we went to the ER that night.  The Provo ER transferred us up to inpatient at Huntsman. (No ambulance or anything, I just drove us up here.)
 
Somewhere in all of that we found an out-of-state doctor who squeezed us into his schedule.  There aren't a lot of Sarcoma Oncologists that have both pediatric and adult experience.  (I think most people reading this know John's cancer is super rare, but more common in kids than adults.)  So John contacted the best two in the nation and one responded and agreed to see John before the end of the year.

So back-tracking to the hospital/ER visit.  The symptoms looked like liver failure stuff, but with scans and tests, they decided it was John's gallbladder that was causing the symptoms.  So they just watched John for a couple days and then Sunday they put in a gallbladder drain.  Then they watched a couple more days and then put in a wider drain.  During all this time, different teams of doctors were coordinating and taking things slow because A-that's how it goes in a hospital and B-John's immune system was down and he had low platelets so he wasn't really healthy enough to do anything else.  John's liver enzymes and bilirubin came a little closer to normal after the drain was placed but then they just stayed abnormal but level for a few days.  John and I decided if they weren't going to do anything but watch, that maybe he could go home.  So we asked and they decided to let us come home since he had remained stable and they didn't think anything else they could do was going to benefit him.

So we went home on the 23rd. John stayed in bed basically all weekend. He never felt any better after getting home and couldn't keep any food down.  He has bruises everywhere.  His yellow didn't clear up at all. He had a hard time keeping his eyes open; he had a hard time sitting.  His drain was supposed to be draining bile, but it was just blood draining out.  He made it downstairs for a couple visitors. He made it up for a short part of our Christmas Eve party and Christmas eve pajama pictures with the boys.  He made it downstairs to watch the boys open their gifts on Christmas morning.  Then he spent the rest of the time in bed with a few visits from my family members and also the boys to show off their Lego creations.

The day after Christmas we headed back up to Huntsman. They gave him platelets last night. They've gotten his pain under control.  He's gotten two units of blood today.  They found a blockage in his intestines, so he got a shot and that helped clean things out.  He still can't keep food down though.  Now we are just taking things a day at a time.  Right now we are waiting for an MRI of his abdomen, which will catch his liver/gallbladder area.  After that the doctors will discuss what they see and let us know if they have any type of a game plan at that point.  

So now as far as chemo goes, it's still in process of getting approved because it was initially denied and now is in the appeals process, I think.  No chemo, though, until his liver/gallbladder issues are resolved.  We cancelled our out-of-state appointment with the other Sarcoma Specialist.  

Scans showed increased cancer activity in his skull/head.  The cancer in his spine was unchanged.

I tried to mostly stay at the hospital during all of this, but I had a test I had planned to take on the 21st of December.  John asked if I could take it sooner, so I ended up taking it one night while he was in the hospital that weekend before Christmas.  Carson was SO excited about his Christmas concert, so I went to that.  I'm able to sleep at my grandma's - she lives near Huntsman.

During all these last minute appointments and rescheduling appointments is a lot of childcare coordination.  We have had a lot of help, early morning help, last-minute help, cancelled help and people letting us change plans on them a lot.  I try not to schedule child-care help until I know what is going on and then by time I know what's going on and get things scheduled, it sometimes changes. So I try to impact as few people as possible with all of that, but obviously it still happens and people are still nice and still offer to help; I really appreciate that!  The more help I coordinate when changes come up, the more stressful it is to make sure I contact everyone to make sure they all know the change of plans.  So really and truly, thank you to everyone who lets me be a crazy person about scheduling and coordinating!

That is a really long post, I hope I got all the major details.  Even though John felt miserable we were all so glad he was home for Christmas.  Thank you all for your prayers, we feel them every day helping us get through all of this.  The phrase it takes a village is sure true and we are blessed with the best village ever!