A List of Good Things

Jul 25, 2021

It has been three weeks since I've written anything about Aaron.

And in this case, no news was good news because these have been the best three weeks we've had since January. 

Here are some good things that have happened:

*Aaron has been fighting cytomegalovirus (CMV) since the beginning of June. Even though he didn't have any actual symptoms, his doctors immediately started him on an anti-viral medication that had to be given through his central line three times a day. To Mike and me, this virus seemed fairly innocent and like it didn't deserve so much fuss and attention. For most of the population, this might be true, but for someone with brand new bone marrow, it can be quite dangerous. I have to admit that I grumbled about all of the infusions until one of the veteran nurse practitioners said, "I can remember when we lost transplant patients to CMV. We didn't detect it soon enough, and it overwhelmed their bone marrow." I stopped complaining after that, but it was still a day of much rejoicing when Aaron's CMV level finally came back as "undetected." That meant we could go down to only one infusion a day, which felt like practically nothing compared to what we were doing. (And I have to give a big shoutout to Mike who handled about 80% of all of the infusions.) 

*Aaron's counts are looking relatively good, especially for this stage of transplant. As of Thursday, his WBC was 3300 (neutrophils were 2100); hemoglobin was 11.0; and platelets were 137. These numbers are all still considered low, but hemoglobin and platelets are edging very close to normal. It is not unusual for the white blood count to be low right now since he is still on an immunosuppressive drug (and actually, even though it is low, it is still higher than we saw his WBC after he came off of the immunosuppressant last time, so that's good news.) 

*The BMT team took Aaron off of micafungin, which meant we eliminated another nightly infusion. This means that Aaron is down to just one infusion of foscarnate (the anti-viral) every morning and one infusion of magnesium every night, plus his daily pills. It no longer feels like we're tethered to home by a short medical tube. Hopefully our circumference will continue to expand as we distance ourselves from transplant. (Aaron is at Day +93 today.)

*Our kids spent a few days with Mike's parents at their cabin in Logan Canyon. Although we couldn't leave Aaron for the duration of the stay, he got to spend the day there when we took up the other boys on Sunday and again when we picked them up on Wednesday. This felt like a true treat to him (and to all of us, to be honest). 

*Aaron's doctor never had to follow through with his threat to put Aaron on a feeding tube. His appetite came back and so did the pounds he had lost. Unfortunately, this also means that his diabetes is back to where it was, but it's a tradeoff we're willing to take. 

*He has hair again! It still looks pretty thin and patchy, but give it another month, and he might even need a haircut!

*It has been over a week since he has needed to take Zofran for nausea. 

*Maybe the best way to tell that things have improved is just in the way Aaron is acting: he feels good and has the energy to match it. He's up for anything, including a bunch of things he's not allowed to do yet.

With a good list like that, you might wonder if there's been anything to dampen the mood lately. 

And unfortunately, there is.

It can be summed up in a little six-letter word: SCHOOL.

I had been waiting to bring up the subject of school with Aaron's doctors but finally decided it was time since the first day is fast approaching. Mike took Aaron to his appointment on Thursday. I anticipated a lengthy conversation as they weighed the risks and benefits of social contact at school. I sent Mike with several suggestions for possible accommodations we could make in order to make school safer. 

But as it turned out, any preparation on our part was for nothing because Dr. R. shot down the idea of school as quickly as Mike brought it up. He said that even when Aaron reaches one year post-transplant (in April), his immune system will still only be equivalent to that of a newborn baby's, so it would be foolish to send him right now when his immune system is working even less than that. (And he said that this would be his opinion regardless of Covid's status.)

There are a number of reasons why I feel like this statement is an exaggeration, but I won't get into those right now, especially since I don't have any actual data to support myself. 

But basically, we're at an impasse. I feel strongly that Aaron needs to go to school in some capacity this year, but I also am extremely hesitant to disregard the doctor's advice. What I really wish is that Dr. R. hadn't gone with a "one answer fits all" approach. I feel like there's a great difference between a 13-year-old whose counts look good, is willing to wear an N95, and could literally come home during high-exposure times of the day (like lunch) compared with, say, a five-year-old with unstable counts who doesn't like to wear a mask and is around a bunch of kids who can't stay out of her face. How can we give both of these situations the same answer? 

This discussion isn't closed for me yet, but I have to arm myself with more information first. I need to set up a meeting with the vice principal at the school so we can come up with a 504 for Aaron and talk about our options. In the past, his junior high has been very easy to work with, and maybe they have some brilliant idea that I haven't thought of yet. Unfortunately, everything that was in place because of Covid last year, and that made transitioning from in-person to online so easy, is no longer in place, and that's going to make it much more difficult to find a virtual option that will work. 

All I know is that the doctors are only looking at this from a physical standpoint, and they see a boy with a very fragile immune system and brand new bone marrow. I see that same boy but with the added layer of his mental health and well-being which is absolutely craving social interactions, a challenging academic environment, and the personal satisfaction that comes from achievement. In many ways, it would be easier to keep him at home for another school year, safe in his no-contact bubble, but the cost of this would be great. I'm convinced there has to be some middle ground, a compromise that will be just right for him.

So stay tuned . . . 

Aaron on his first day of kindergarten, 2013


  1. So glad to hear of Aaron’s progress. The school dilemma is so hard!

  2. I'm glad he's doing well and I hope you find a good plan for school for Aaron. You guys are amazing!


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