Unexpected News (of the Good and Bad Variety)

Jun 6, 2021

The other day Maxwell said, "No matter how low I put my expectations, I always need to put them lower."

He's not always a glass-half-full kind of guy, if you couldn't tell. He likes to make plans, and when those don't pan out, he takes it personally (I believe the above was said in response to my refusal to get Chick-fil-A for dinner). 

Much as I don't want to admit it, I often fall into the same camp as Max. I spend time in a pessimistic headspace, hoping to avoid the crash that follows a disappointment. I'm not saying that this makes the disappointment any easier, but at least you feel like you were somehow slightly prepared for it.

But even I was caught off guard by how things went down at Aaron's appointment on Tuesday. The day before had been Memorial Day, and we had spent it in what seemed like an almost normal way: lawn games, frozen treats, water guns, grilled hot dogs, etc. Aaron seemed to have boundless energy. When the rest of the boys got tired of playing, he was still ready for more. I have to admit, I was feeling like we might get to have a somewhat typical summer after all.

But if there's one thing I need to remember, it's that a transplant makes its own rules, and you never know when it's going to throw a curve ball. Maybe there's some wisdom in Max's advice--just knock down your expectations by a few notches, and maybe you'll be about right. 

At every appointment, they draw labs that check for three types of viruses: Epstein Barr, adenovirus, and cytomegalovirus (CMV). These can be especially damaging to a new transplant, and so they want to catch them as soon as possible. 

Aaron's CMV number has always been positive, but it was dormant. From Max's lab work, we knew he also had a dormant case of it. There's a high chance that anyone reading this probably does, too.

But on Tuesday, the team came in and said that the virus number had gone up, meaning it had been reactivated and needed immediate hospitalization and treatment. CMV is not uncommon for transplant patients, but we never dealt with it during the first transplant, so I didn't even know it was something I could worry about. 

The treatment for it requires three infusions a day. The anti-viral medication can be very hard on kidneys, so a high volume of fluids must also be given before each infusion.

Even though Aaron felt totally fine and wasn't experiencing any symptoms, he had to be admitted back into the ICS. We had not been anticipating a hospital stay at all, so to hear the news, "We have to admit him. He's going to be here for at least a week, but more likely two or three," was hard. We were grateful that they had caught it so fast, but there's nothing quite like being cooped up in a hospital room when you don't even feel sick. 

I don't have a lot of stories or tidbits to share from the hospital this week because I haven't been there. Mike has been holding down the hospital fort, and I've been holding down the home fort. We had intended to tag team like we usually do, but Maxwell woke up vomiting early Friday morning, so we couldn't chance a possible transmission of whatever he had. I get the daily (sometimes hourly) reports from Mike, but it's not the same as being there.

I'm not going to pretend this hasn't been a blow to our morale. It's hard to just get handed a multi-week hospital stay without any sort of advanced notice. Aaron had to rely on The Cosby Show and Nintendo for the first few days because the Lego well had dried up (thanks, Mom, for replenishing it!). 

There's a part of me that feels like we should have kept this possibility in the back of our minds. We should have put those expectations a little bit lower.

But then sometimes . . . sometimes . . . you set your expectations low, and they end up being wildly exceeded. 

Remember last week when I said that Dr. R. bluntly told me that Aaron's T-cells would never be 100% donor? 

We finally got the results back from Aaron's first chimerism, and in Dr. R's words, "You got a perfect score, Aaron!" His chimerism was 100% donor across the board: platelets, red blood cells, neutrophils, CD-33, and yes, even T-cells. We were all in total, unbelievable, blissful shock. The thing we had been told was never going to happen actually had. Our expectations were blown apart in the best possible way.

Of course, a few minutes after we had received the news, I started to doubt it (Max and I have the same genes, remember?). I called Mike, "I think there must have been something wrong with the test. They misreported the results. Or they didn't interpret them correctly in the first place."

But after discussing this with Mike and the team, I think I finally feel a measure of peace about it and can fully embrace this good news. When Mike questioned Dr. R. about what he said last week, he said, "Well, I was wrong. 100% donor T-cells are rare, but it can still happen."

When you think about it, it actually makes sense that Aaron would be more likely to have 100% donor T-cells because this is his second transplant with the same donor. Maxwell's T-cells were already a big percentage of Aaron's bone marrow. If they were, say, 87%, and Aaron's T-cells were 13%, then think about what happened when Aaron's bone marrow was wiped out a second time with chemo and radiation. Most of the T-cells were destroyed, but if any were left, then there was a high probability they actually belonged to Max, not Aaron. 

Although we are celebrating these donor T-cells, we know that having them at 100% actually puts Aaron at greater risk for GVHD. However, it significantly decreases his risk of having another relapse like last time, so of course we are looking at it as a very good thing.

The other thing to consider is that just because the T-cells are 100% donor right now doesn't mean they always will be. For one thing, a blood test is not as accurate as a bone marrow biopsy. You might remember that when Aaron relapsed, we had done a blood chimerism that still looked good, but it was the biopsy that showed the real story. Additionally, Aaron's bone marrow is still so new and the cells in it are still so sparse that there could be a few of his own T-cells that are kicking around that were not detected on a blood test but could eventually multiply into something more.

However, regardless of possible changes in the future, he is still in a really good place right now. When his  initial chimerism came back after his first transplant, the T-cells were only 47% Maxwell's--not even quite half. So it's obvious that he is beginning in a much better place with this transplant, and we couldn't be happier.

And would you like even more good news? Because I've got some. Aaron's platelets started inching their way up this week. He is currently sitting at 42, and he hasn't needed a platelet transfusion in over two weeks. When you consider that he was needing transfusions every 2-3 days in the weeks pre- and post-transplant, that's pretty big news. 

So that's it: the unexpected bad news and unexpected good news of the week. I keep thinking I'm going to run out of things to write updates about, but so far, things haven't been quite as boring as we would like.


  1. Thanks for the update! I'm so glad you guys got some good news too!

  2. Thanks for keeping us updated. I’m feeling optimistic but then I’m not the one involved in keeping the hospital vigils.

  3. That’s great news about his chimerism! I hope you get him home soon. I think you are doing an incredible job of housing down the home fort.

  4. I love your pictures - they are priceless...and the family story that you are telling is beautiful.

  5. Back in Texas, I had a special star of my blood donor card because I was CMV negative (the blood people told me I had "baby blood"). Out here on the West Coast I haven't heard about it anymore, and I don't know whether I picked up a case of CMV somewhere or they don't screen for it. I still have O- blood, so they still like me to donate.

    Sorry about the hospital stay, but I'm glad you had a good Memorial weekend and that the lab numbers are headed in the right direction!


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