Patiently Waiting

Sep 29, 2019

Tonight, just out of the blue, Bradley said, "You know what would be fun? If Aaron didn't have aplastic anemia and no one else did either."

We are approaching three weeks in the hospital, and I think we're all feeling it, but Aaron most of all. While Mike and I have the liberty to come and go, or at the very least, walk down the hall to stretch our legs, Aaron has literally not stepped even a foot outside his room since it shut behind him twenty days ago.

The walls are closing in, possibly because we keep adding things to them in an attempt to liven up the space.

Last week, one of Aaron's cousins visited him. After he was there for about fifteen minutes, he looked around and observed, "This room feels smaller than I was expecting."

Then, a few minutes later, "How much longer do you have to be here, Aaron?"

And finally, a few minutes after that, with a note of desperation now in his words, "I've only been here an hour, and I'm ready to get out of here!"

Contrary to feeling offended, Aaron thought it was hilarious . . . probably because it summed up his reality so well.

This past week, I looked at the calendar and started to do some mental calculations. The doctors had told us engraftment usually happens somewhere between Day +14 and Day +21. Following engraftment, they said patients typically have to stay at the hospital 3 to 7 more days.

Aaron has been doing so well that I thought, What if he engrafts on Day +14 (tomorrow) and then only has to stay three more days (Day +17). That means he could be home as early as Thursday!!

If you've talked to me in the last few days, I might have said something like, "Aaron might be home by next weekend!"

But today during their morning rounds, the BMT team inserted a little dose of reality into my optimism. In my mind, early engraftment meant better: Maxwell gave him a lot of cells that got the ball rolling sooner, right?

Well, maybe not so much. Today they told us that if Aaron engrafts too quickly, it could actually be a red flag that something is wrong. For example, it might mean that Aaron's own cells started to produce, and then he would be at risk for Graft-versus-Host disease (where the donor's cells start attacking the recipient's cells).

Our doctor then put in his own guess for engraftment right on Day +21 and then said he would expect Aaron to stay in the hospital another week beyond that, meaning we would still have another two full weeks in the hospital.

Maybe he could just sense that we were getting our hopes up, and he didn't want us to be disappointed at the end of the week. Or maybe that's how he really thinks things will go for Aaron. I don't know. But I guess I feel like I need to retract some of my optimism from the last few days.

This is reminding me of what it felt like to be approaching my due date when I was pregnant. Anytime anyone saw me, they asked how I was feeling and if I was having any contractions and whether I thought I was going to have the baby soon. I dreaded having to make a phone call knowing that the person on the other end would probably answer by saying something like, "Are you on your way to the hospital?"

Just like that was completely beyond my control, so is this. So we're pushing our expectations back down into the normal range. I'm going to stop day dreaming about an early homecoming and just give Aaron the time and space to let his body do what it's already been doing so well. It's not like I have any say in the matter anyway, and it could really put a damper on hospital morale if we start thinking about home too soon.

If it ends up happening this week, it will be a happy surprise, and if not, we'll just keep plugging along as usual. No harm done.

At least Aaron is keeping his sense of humor. This afternoon, I was asking him questions from a little question-and-answer game. One of them was, "If you could skip a day of school, what would you do?"

He got a little smirk on his face and said, "I'd go to the hospital."


  1. I see what you did there with the title. Aaron sounds like a really brave guy. I'm thinking of your whole family and pulling for you! Also, I'm always amazed by how good your photographs are, and here you don't even have the luxury of the gorgeous Utah skies...

  2. Aaron really has been so patient. He's an inspiration! All of you are doing such a great job of this--even little Ian. I hope you don't have to wait too much longer.

  3. I so get the stir crazy feeling. Sometimes after the weeks have stretched until you begin to doubt if there is a world outside the hospital I’ve observed the coping mechanisms of the kids. They have painted the windows in the room, turned down the light and heat in the room till it feels like a cave, we’ve even snuck baby bunnies into the hospital for them. ( this isn’t an option I would guess for you). Often I’ve thought the kids do better than I do coping. The time does make finally leaving and walking out into the open air so sweet, and home so beloved. It all gives you experience. But experience is so expensive😊


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