Cyclo

John is on an immuno suppresant called cyclosporan.  After every Allo transplant the patient goes on cyclo or tachro to suppress the immune system.  The reason this has to be done is basically to try and keep the GVH from flaring too bad.  These drugs go right to the T cells and try to stop them from dividing and suppling an immune system. It T cells divide too fast the body can be surprised by the new T cells and cause major GVH. After John's transplant he was on tachro.  Tachro was taken twice a day and should pretty much clear the system every 12 hours.  When John was admitted 9 days after being released from his Allo, his tachro level was at 29.  At that point he had not had it in almost 2 days (he had been throwing it up). So, his level should have been 0.  Tachro clears through the liver and John's liver was not functioning normal and was not clearing the tachro. It took 15 more days for his body to clear that tacro.  Some days it did not go down at all.  Because he had GVH he also went on the steroids (prednisone). Prednisone basically does the same thing as tachro and cyclo, but it clears through the kidneys and has way worse side effects.  But it was necessary to fight the GVH for John. Leaving the hospital they started John on cyclo (instead of tachro - basically a cousin drug).  They have been watching his labs twice a week and monitoring his levels.

Their first goal was to get John to a cyclo level of 100.  It took 6 weeks of adding very slowly and watching his labs to finally get him to 100. (Which was just this week). We found out yesterday that a level 100 won't do a whole lot of what cyclo should do and most patients need to be around 300.  But, because John has been on a high dose of steroids, no one was worried.  But, now more balancing between these 2 drugs.  The prednisone is being tapered at 10 mg every 5 days. (He left the hospital taking 180 mg a day). He is now taking 110 a day. Once he gets to 80 in about 11 days, they will keep him at that level, probably for a few weeks and then taper more.  During this time, his cyclo level will slowly be increased.  He has to have this immuno suppresant for at least 1 year before the body can try to work better with the new cells.

John is only one week away from his day 100 post transplant mark!! The thing is, that typically at day 100, the tachro/cyclo starts to taper. But, John has not even gotten close to the 300 mark to start to taper. Typically it is a 9 month taper. So, it will have been one year of the immuno suppresant.  Looks like John's will be a bit longer.  It may take a few more months to even get him to 300, then keep him there for a few months, then taper for 9 months.

The Dr's on East 8 are SO good at doing what is best for every patient.  They truly care and watch every patient. Every day in rounds talk about every in patient and once a week talk about out patients.  John has been so far off of protocol, but that doesn't matter. He has been different from the moment he walked in those hospital doors on October 16, 2012.  They literally had to research his type of cancer and call specialists to see what to do. And they have been amazing!  So, for now - we hold on to faith and keep trusting these amazing Dr's. And watch his body and see what it can handle.

Just keep swimming

You know that line from "Finding Nemo", "just keep swimming"? That is how I feel most days.  Life is kind of hard most of the time. Yes, John is through his 2 transplants and yes, he made it through 3 weeks of hell when his body was shutting down. But, that does not mean things are any easier now.

John is still really really weak. Probably more weak than when he left the hospital last. Part of that was from laying in a hospital bed for over 2 weeks. But the bigger part is all the steroids he is on. The steroids are to help keep graft vs host from being too much.  We do want some, but only the manageable kind :) When he last left the hospital he was taking 180 mg a day.  They are slowly tapering him 10 mg a week, he is now at 120 mg a day.  Just for reference, a low does steroid is 7.5 mg or lower and high dose is anything over that. Obviously John is WAY over that. The steroids are causing lots of issues.  One is the extreme weakness. One is cushioning sydrome, one is it is hard to sleep and another is high blood sugar levels.  Not much he can do for weakness, he does still go to physical therapy twice a week and is supposed to do exercises at home. It will just get better in time. Because of how weak he is, if he falls (which he has several times), he can not get himself back up. The other night I was gone and he fell on the front lawn moving the sprinkler. He had to crawl through the garage into the house and yell for Isaiah to bring him his phone. Then he called his brother who lives around the corner to come help him up. Dr. Peterson said he should not be left alone for now. That is really hard too. Because he can't go places I go to run errands (like Costco, Walmart . . .), but I can't leave him home. I have a few times for short periods and just make sure he has what he needs and his phone is near by. But, no more going out in the yard alone and definitely not going up the stairs. I switched our bedroom with our oldest (so she now has a huge bedroom with bathroom and walk in closet) and we are in her bedroom (which is a lot smaller, but is working good). Cushioning sydrome is swelling. John has it in his face, neck, back, stomach and ankles. At times it is pretty bad.  His face is what probably bothers him the most. He thinks it looks awful, the Dr.s say that have seen way worse. Nothing he can do about that, but he does try to stay off his feet as much as possible. For sleep he takes a sleeping pill and benadryl and it usually helps. Sometimes not. And when he tosses and turns and doesn't sleep, I don't sleep. Problem is that I don't have steroids in my system to keep me going all day after only 4 hours of sleep :( His high blood sugars have been an issue. Several times it has been super high at bed time and he will have to check it every 2-3 hours all night long and call the hospital triage nurse with each reading. That makes for really long nights. He does insulin at least 4 times a day, he now calculates his carbs before meals and tries to pre medicate. It does not always work though. He is trying to eat less sugars and more protein. Luckily it is temporary and will go away when the steroids do (which could be a year or more until he is totally off them).

John has his 100 day bone marrow biopsy in a few weeks on Sep. 13.  That will tell us how well his body responded to his Allo transplant. We hope and pray it is a super low percentage of cancer cells (if any). Preferable 0%.  If he has a high number it means the transplant did not work, the cancer is back and there is nothing they can do. They did the most aggressive treatment they could. So, we pray it is working. He will then have another bone marrow biopsy at the one year mark (end of May). The longer he lives the longer his survival rate is. Most patients do not make it through one year after transplant (cancer can come back, or GVH). Once you get to 5 years though, your chance of survival is pretty stable. So, this is not a "oh, we made it" scenario. We will have to worry about GVH or the cancer for years. The first year being the hardest. Any day he could get a fever or infection which is an immediate hospitalization. He has NO immune system and really does not go anywhere other than appointments. After about one year they will start reimmunizing him. He is not immune to MMR, DTaP or any of those that we all got as kids.

We have to be super careful about germs. The kids started school this week (which is so nice to have some routine back), but it also means school germs :( For now, until John gets to day 100 we can never be more than 45 min from LDS Hospital ( it has made for a challenging past month). That is pretty hard. At that point the Dr.s will reevaluate and see what they think.  It will be about a year before he can "travel" short small distances and up to 2 years before going on a real vacation.

It is hard for me to help him, drive to appointments (almost daily), (Oh ya - also because of his weakness he can not drive) take care of the house, cleaning, shopping, cooking, the yard, the kids . . . It will take some adjusting to have him home all the time.  I am so use to have 6 -7 hours a day all to my self when the kids are in school :)

This is hard. We still go one day at a time. We are grateful for every day. We are grateful for the gospel and our family. But, we still have a long road ahead of us.