Day +85

Today is day 85 post transplant. In some ways, it seems just like yesterday that Avery got his new cells, but in other ways, it feels like an eternity. I haven't really posted details about Avery's progress lately. His stats go up and down daily, which makes it difficult to keep up with. I find myself growing impatient, because I thought we would be so much better at this point. But for those of you who ask and pray, here's the latest scoop.

Avery's blood counts post transplant were low, but pretty steady. But over the last 6 weeks or so, they've been dropping lower, and he's been requiring more frequent transfusions. It seems he is going back to his old tricks...which he shouldn't be. Engraftment studies show that he is still 100% grafted, and that the cells being made are all donor cells, which is great! Recent testing shows that the reason his counts are not holding, despite proper production, is that he is now creating antibodies that are destroying the new cells. So, the doctors are trying some new drugs and making some changes to his current treatments to try to fix this. His T-cells have been suppressed with drugs since his transplant so that his body wouldn't reject the new marrow. The T-cells help keep the B-cells in balance, and the B-cells are the ones attacking the new cells. So, we're easing up some on the suppression of the T-cells in hopes that they will help keep the B-cells in line a little more. He's also getting a new drug infusion that is going to start killing his B-cells. The big problem with that is that B-cells play a large role in the body's immunities, so his immune system, which is weak already, is going to essentially be wiped out again. This makes him very susceptible germs.

The second issue we've been dealing with has been a virus count that has been pretty high. Shortly after transplant, Avery tested positive for an adeno virus. We got that one pretty much licked, and now he's been battling the BK virus for about a month. So, he's been receiving extra antiviral infusions during the week to try to get rid of that virus. His count has gone down a little, but it's still quite high (150,000 at the last count).

This antiviral drug and a few other meds he is on, plus the whole transplant process itself is pretty harsh on the kidneys. Unfortunately, Avery went into the process with only one fully functioning kidney. His kidney function was great prior to transplant, but recently has been dropping more and more until the doctors have decided it is requiring some extra treatment. He's taking a new drug that is supposed to protect the kidneys (unfortunately it's harsh on the liver, but we're just watching those numbers now), and doctors have discontinued some other infusions he was receiving. They've also added fluids following some of his infusions and to his TPN he receives every night to help keep the kidneys working efficiently.

For whatever the reason may be, Avery has completely stopped eating. He has always been a reluctant eater, and through the transplant process he had good and bad days. Even when he didn't want to eat, I was usually able to force a little bit in. These days, his lips are locked and teeth clenched. He literally refuses ANYTHING. For all of you moms out there, you may understand how frustrating this is. It makes me feel good to know my kids are eating well; when they're enjoying a meal and they're bellies are full, I feel content as well. So maybe you can imagine the frustration that I feel that he hasn't had anything on his stomach in weeks. His TPN goes in his central line straight into his veins, and his NJ tube is placed in his small intestine, not in his stomach. Sometimes I hear his stomach growl when I'm holding him, and his lips are peeling white skin from them. I know that eating is not a priority right now for the doctors. They want to see his blood counts start stabilizing, and I do too, but for me, this whole eating situation is very worrisome and sometimes frightening. We worked so hard for a year and a half in feeding therapy to get him to eat what he did, and we could always count on the fact that he would take PediaSure in a bottle if he wouldn't eat. Now, he absolutely refuses a bottle. I just started yesterday attempting tube feeds at an incredibly low rate (5 mls/hr) to see if his gi tract can start tolerating it. When we've tried before, he starts having terribly loose stool. I'm hoping and praying that we can start increasing his feeds a little and that his belly will finally start to heal.

Our family is still doing our best to balance everything. Being at the Ronald McDonald House is nice in some ways, but it is so much work not having a nurse or aide to help out. Avery's care literally is a full time job, preparing his TPN and getting it going for 14 hours a day, 10 doses of oral meds daily, 2 iv infusions daily, and now tube feeds as well. Plus, he goes to the hospital 3-4 days a week...and we're talking 8 hour days of infusions. Most of his appointments are at 7:30 a.m., so my poor boy gets woken up, loaded into his wheel chair, snuggled under warm blankets and his mask, and there we go walking across the street to the hospital. Not to mention that with 2000 mls of fluid going into him at night, despite wearing 2 diapers and constant changing, he still pees through and ruins all of his bedding every night, which creates enormous amounts of laundry. We're spending a small fortune on diapers, but they just don't make diapers or waterproof bed pads to keep up with all of this. I would love to have all my kids here, and I do sometimes, but it's too hard with one person. Emerson is at that stage where she cries as soon as I'm out of sight, and of course needs the normal bottles, diapers, and entertaining that any six month old requires. Unfortunately, Avery cries every time she does, and sometimes they both need attention at the same time. Needless to say, this room can get very noisy!!

I'll be honest, there have been a lot of days recently where I felt like I was sinking fast. I have a hard time holding onto my hope that things are going to get better at some point. It takes a lot of prayer and mental strength to force myself to refocus and take some deep breaths and believe that we're going to get through this. My husband told me about a conversation he had recently with someone...why someone would say this to my husband knowing the enormous burden he's carrying right now, I don't know...but this person said that he wasn't so sure there was a "God's will" or a plan in life. He seemed to think that we're all victims of just randomness. For me, believing that God is sovereign, and that He is working in all of this is the only thing that keeps me sane. I know that God's ways are higher than mine, and I choose daily, sometimes hourly, to trust Him. At night sometimes when I actually slow down to let my mind wander, I feel that tight knot in my chest that feels like it's just crushing me, and I have to start praying for peace. Sometimes I second guess myself on whether or not we did the right thing. Of course it's too late, but sometimes I think we might should have just kept doing what we were doing until we couldn't anymore and prayed for a miracle.

I know I probably sound overwhelmed. That's because I am. But, I'm making it a day at a time, and sometimes when I look back to the days behind me, I can't believe I've made it through. I'm trying so hard to believe that one day I'll look back on this time, on my weakness and crazy-emotional days, and I'll see God's grace sustained me.

Please continue to pray and request prayer for Avery. I know that with his transplant being over, some people ask, "Did it work?" and think that it's over with. I'd love to see ANY improvement -- his counts start stabilizing, this virus go away, and Avery start to eat or drink something. I know that sounds like a lot, but I also know that I serve a big God who can do exceedingly more than I could ask or think. Sometimes I find myself saying, "God, just do this one thing for me, and I won't ask anything else." But God isn't limited. I sincerely appreciate the prayers and support for our family. We're really blessed with some great folks who have been helping us carry this impossibly heavy load.

Here's my little guy not looking so thrilled about being at Day Hospital. Notice his hair is growing back, and thanks to some of his meds he's on, he's getting some pretty serious eyebrows as well!


Love,
Bethany