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.