Patience in the Process

Aug 29, 2021

Lately my prayers have contained this near-constant refrain: "Please grant me patience in the process." 

Besides this, I find myself asking for a lot of other things: "Please bless Aaron to be able to go to school after this quarter." "Please allow him to return to all of his normal activities." "Please help his friends to remember him when he comes back." "Please give him back his old energy." "Please help his counts to continue to increase and hold stable." "Please make his bone marrow strong." "Please bless him to never relapse ever, ever, ever again." 

But in the middle of all my begging, I take a deep breath and finish with, "And please bless me to have patience in the process."

Because that's what this is: a process. It is not a quick fix or a simple solution, although sometimes it kind of feels like it should be: get rid of the bad cells, put in some new ones, and presto! Good as new! 

But unfortunately, with bone marrow as ravaged as Aaron's was (both by the work of his own T-cells and that of the chemo/ATG/radiation), it takes time to restore what once was. It's a little like the slow process of regrowing an entire forest after everything has been destroyed by a fire (that's my own analogy, by the way, so it might not actually be like that). 

Thankfully, even though it's slow, we are seeing some good progress. We got the results of Aaron's biopsy back. One of the main things they look at in a bone marrow biopsy is, obviously, the health of the bone marrow. When Aaron was diagnosed (both the first and the second time), his cellularity was less than 5%. At 100 days days post transplant, the cellularity for a 13-year-old kid might be anywhere from 10%-50%. 

Before sharing the results, Dr. Rayes said, "I want you all to guess Aaron's cellularity." I could tell that it was good news, but because I'm a pessimist and hate being disappointed, I aimed low and guessed 15%. Mike's and Aaron's guesses were higher but still conservative. 

Dr. Rayes was wearing a mask, but I'm pretty sure he was smiling underneath it when he exclaimed: "It's 50%!" He admitted, "When I saw that the results were in, I was scared to open them because I wanted good news for Aaron. I was so happy when I saw what they were!"

Mike said, "This is great! When he had his bone marrow biopsy after his first transplant, his cellularity was only 20%."

Dr. Rayes stopped him, "What do you mean, 20%? No, it wasn't. I just looked back at his other biopsy, and it looked like they couldn't get a good analysis of the core. The results were inconclusive."

In the middle of all of my good feelings about the current state of Aaron's bone marrow, I felt a little breathless from this revelation from the past. At the time of Aaron's post-100 days biopsy the first time, I wrote down our conversation with the doctor after he shared the results (this is one of the blessings of keeping a fairly detailed record--I don't have to rely on my own memory but can easily go back and read how it all transpired). At the time, the doctor said that Aaron's cellularity was 20% and that, although this wasn't ideal, it also wasn't unheard of. He never mentioned the inconclusive data and certainly never told us that 20% was merely a made-up estimate.

I didn't know enough to question this report (and for some reason, this is one we can't look up ourselves). But knowing what ended up happening in January of this year, I think that biopsy was our first red flag that things weren't going as well as we were hoping. In fact, I think if another biopsy had been performed when Aaron was one year post-transplant (which it was not), it would have shown struggling bone marrow.

If the doctors had been frank with us or added another data point via biopsy, would this have changed the ultimate outcome for Aaron's bone marrow? No. The graft still would have failed; Aaron still would have had to do another transplant.

But . . . we would not have been blindsided. 

We would have been prepared for a likely, though highly undesirable, outcome. 

As we've been going through this second transplant, my number one fear is that the transplant will fail again . . . and that we will once again be merrily going about our lives when it crumbles without warning. 

I think about this constantly. Every time someone asks me how Aaron is doing, I answer with hesitation: "He's doing well . . . I think . . . at least it seems like it right now." I'm terrified of giving a definitive statement because I can't forget that I gave such a one back in January, less than a week before his world came crashing down again. 

Of course, none of us know what the future holds. There are a million ways for the trajectory of our lives to be changed in an instant. Bone marrow failure is the thing I happen to fear the most right now because it is what is consuming my mind and heart. But any number of equally drastic or challenging events could also happen, just like that. 

I don't expect Aaron's doctors to be magicians and predict the future. But I think we deserve to know the facts instead of being sheltered from them. And I think questionable results call for a re-test.

I've been thinking about this a lot because the bone marrow biopsy revealed something else. The T-cells, which had been 100% Maxwell's when we did a chimerism in June, are now only 82%. The doctor had warned us that, just because they were 100%, didn't mean they would stay there. So seeing a change wasn't necessarily alarming, although 100% to 82% seemed like a rather significant drop to me. 

Dr. Rayes assured us that he wasn't one bit concerned about the T-cells. The rest of the chimerism was still 100%, and those are the numbers they tend to pay more attention to. The T-cells can fluctuate, and a mixed chimerism usually helps keep GVHD at bay. Plus, now that Aaron is being tapered off of the immunosuppressive, Maxwell's T-cells will probably finally have a chance to take hold. But I can't help remembering that is was most likely Aaron's T-cells that took out his bone marrow both the first and the second time, and I would just feel so much better if there weren't any of them left.

Also, knowing more of the full picture of the biopsy from the first transplant, I'm feeling less willing to trust that what the doctor says to us in the exam room is the same thing the team says behind closed doors. Are these shifting percentages in T-cells really not a concern for them . . . or only when they're talking to us? 

It is these unanswered questions that make me feel so uncertain about the future, even as we keep moving forward in a generally positive direction. And that is why when I am praying, I often cast aside specific requests and simply ask, "Please grant me patience in this process." 

Aaron in June 2013, age 4


  1. I understand the fear of what doctors are saying, and how sometimes what they mean gets mistranslated by what they actually say. So patience is necessary, and I still want Aaron to have all the good things.

  2. Patience is tough to hold onto. While caring for everyone else, save a little time for yourself

  3. Fantastic news! And a thoughtful post!


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