A Few Random (But Perhaps Interesting) Facts

Sep 9, 2019

As one of the doctors was leaving Aaron's room a few weeks ago, he turned back, gave a wry smile, and said, "Enjoy your time at Primary Children's Hotel and Spa."

We thought it was funny at the time. But now Aaron has his own room reserved; he has activities booked; and tomorrow will be the first day of his extended stay at this magical place where miracles happen. 

Today Mike asked Aaron what he wanted for his "last meal." That sounded a little dismal to me, but that's kind of been the lens through which we've been looking at everything lately. There have been a lot of lasts (for now). Last day of school. Last day at church. Last walk around the block. Last trip to Menchie's. Last turn cleaning up the kitchen. Last time practicing the piano. Last sandwich from Jimmy John's (his favorite). Last family party. Last night in his own bed.

Over the weekend, we had several big rainstorms. The temperature dropped by about twenty degrees, and suddenly it felt like fall. Yesterday we sat on the porch, and I told Aaron to breathe it in--that hint in the air that can't be mistaken for anything except the change in the seasons. It's strange to think that the next time he's outside, he might need a jacket, or even a coat.

But even though that might all sound a little melancholy, I would say that the general feeling over here tonight is of excitement and anticipation. Up to this point, it's all been prep work. 

But tomorrow? It's go time.

In honor of the day, here are a few facts we've learned along the way that you might find interesting:

1. Maxwell was the only match for Aaron, but the other three boys all matched each other. So we're safe if this ever happens to us again (which is where my brain immediately went, obviously). 

2. Aaron and Maxwell have different blood types (A+ and B+, respectively). You might wonder, as I did, how they can have different blood types but still be a perfect match for each other. It's because the actual matching happens with the ten major human leukocyte antigens (HLA).  HLAs are proteins on the surface of all the cells in your body. They are what give the signal to your immune system not to attack. So when Maxwell's stem cells enter Aaron's body, they will match the HLAs found on Aaron's other cells and feel right at home. 

3. After the transplant, Maxwell's cells will gradually take over Aaron's marrow until Aaron's blood will eventually be 100% Maxwell's blood. So Aaron's blood type will permanently change to B+. If Aaron ever needs to have a DNA test in the future, he will have to do a cheek swab instead of a blood sample because his blood will identify him as Maxwell, not Aaron. (This also means that if Aaron ever robs a bank and leaves blood all over the scene, Maxwell could get framed for the crime.)

4. Related to Number #3, if Maxwell was a girl, then a DNA sample of Aaron's new blood would identify him as female.

5. Red blood cells have a life span of about 120 days. Platelets have a life span of about 6 days. Consequently, Aaron has only had two blood transfusions but eight platelet transfusions. (Nothing is more discouraging than seeing his platelets spike to 82 only to plummet back down to 5 in less than a week.)

6. Chemotherapy will completely wipe out Aaron's immune system, including all of his immunizations, which means he will have to get all of them over again. And he won't be able to get the live virus vaccines (varicella and MMR) until two years post-transplant.

7. Maxwell's marrow will be harvested from his hip bone with a long needle. But it will be put into  Aaron through his veins. Somehow those little baby cells know where to go. 

8. Aaron will be on a restricted diet for a few months following the transplant wherein he will be allowed to eat twinkies but not blueberries. This strikes me as both funny and wrong. He also won't be able to have soft-serve ice cream or fountain drinks because the sanitation of such dispensers can't be trusted.

9. Out of all the tests Aaron had to do in preparation for the transplant, the neuropsyche evaluation was actually the most fun. Even though it was three hours long, the psychologist was so nice, and he basically signed off Aaron on his sixth grade year, which relieved the pressure on both of us.

10. While it is true that Aaron won't be able to be around large groups of people during his months of isolation, he will be allowed to interact with healthy visitors. So we look forward to seeing many of you (hint, hint)!

In attempting to explain some of the more technical things in this post, I realized that even though I feel like I've been taking an immersive class in medical terminology, my understanding of it is still woefully lacking. It is at times like these that I like to remind myself of Mary Poppins' sage advice: "We're on the brink of an adventure, children! Don't spoil it with too many questions!" 

Here's to the adventure!


  1. Good luck! I have to say that my nephew very much enjoyed his stays at Seattle Children's Hospital (although they were not as long) and the other kids were actually a bit jealous.

    Also, is it sad that as I read your third point, my mind immediately went to "Aaron can frame Maxwell for his crimes!" before I got to the parenthesis at the end? They can be alibi brothers!

  2. Fascinating facts! Been praying for your guys. Will keep it up.


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