Our Home Away From Home

Oct 23, 2019

 Aaron may not be living at the hospital anymore, but he is still spending a lot of time there.

Yesterday he was at the clinic for five hours, today he was there for another three, and he'll be back again on Friday.

It's not very exciting; we spend most of our time sitting in a room waiting--for blood draws and lab reports and doctors and for someone to tell us we're finally allowed to leave.

Yesterday we had a little change to the routine. Aaron is at Day +37, so they started him on a prophylactic anti-pneumonia medication. (I think his white blood count had to reach a certain number before he could get it, which is why it wasn't started when he was discharged.)

The pentamidine was supposed to take about two hours to run, but when he was forty-five minutes into it, he started to get really nauseous. So they immediately turned it off, gave him zofran and benadryl and then waited a bit before starting it again (at half the speed).

In the middle of all of this, Dr. Harris came in. He said if Aaron couldn't handle the pentamidine, then they would try a different medication--a thick yellow liquid that would have to be taken daily (whereas this one dose of pentamidine would last 3-4 weeks). When he said that, I watched a look of mild panic followed by firm resolve come over Aaron's face. He does not have a good track record with yellow liquid medications.

Luckily, the rest of the medication went in without drama, and we were able to go home.

He was back at the clinic today for a blood transfusion. I know. A transfusion. It's kind of disappointing. We were hoping we'd seen the last of those a few weeks ago. But his hemoglobin has been slowly but steadily dropping, and it finally went below the transfusion threshold yesterday. (They offered to let him stay and get the transfusion when he was getting the pentamidine, but he'd had it and wasn't interested in staying even a minute longer than necessary.)

It was just on Monday that Aaron came up the stairs huffing and puffing and said, "I am so tired. I think my hemoglobin must be getting low." I brushed him off and thought he was just seeking attention. So he looked a little justified when they said he would need a transfusion, and when Dr. Harris heard that I hadn't been sympathetic about his lack of energy, he said, "Aaron doesn't really strike me as an overly dramatic kid. If he said he's tired, I'd be inclined to believe him." Point well taken.

So today he was back for two units of blood, and he really did seem much perkier after he got home. Although the goal is, of course, no transfusions, no one is acting concerned or surprised about Aaron's need for blood. It is common to continue to get transfusions for awhile after a bone marrow transplant as the body begins to make cells on its own.

Aaron's platelets, however, are another story. It seems he has decided to invest all of his energy into platelet production and leave the red blood cells languishing behind.

Tonight Maxwell asked, "What is Aaron's platelet count?" (He finds this all very fascinating.)

"182!" we exclaimed.

"Wait, 182,000?!" He was floored. "What was it when Aaron was diagnosed?"

"4." A measly, pitiful 4.

"What was the highest it ever was after a transfusion?"


"Wow, so this is the highest it's ever been?"

"Since becoming interested in Aaron's blood, yes. But Max, this is the best part: We found out yesterday that Aaron's platelets are 100% yours." (This was the result from the chimerism test I mentioned last week.)

A slow, wide smile spread over Maxwell's face: "Looks like I'm taking over your body, Aaron!"

Aaron didn't seem one bit mad.


  1. Makes you wonder if Aaron (or Maxwell) will want to go into medicine some day!!

  2. Amy, I didn't realize what your family was going through! May God bless you and your family as you continue to progress through this difficult challenge. ❤️

    1. Hmmmm. My name didn't show up. This is Kim Sanchez.

  3. This is a very sneaky way to get twins without the hassle of two babies. I hope Aaron's red blood cells wake up (Maxwell's off site red blood cells?)!


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