There are No Guarantees

May 30, 2021

I had a funny conversation with one of the BMT doctors this week. We were talking about Aaron's diabetes diagnosis (which is something that continues to mystify everyone, but at this point, their best guess is that he was genetically predisposed to Type 1 diabetes, and the stress of the transplant triggered the onset of it). I said something like, "The one good thing about diabetes is that everyone knows about it! We have so many people to talk to and so many resources. It's the opposite of aplastic anemia, which no one has ever heard of." Dr. R. gave me a funny look and said, "Aplastic anemia isn't that rare. I see people with it pretty regularly." I exclaimed, "That's because you see literally every kid in this part of the country who has it!" 

As an informal poll, let me know if you've heard of Type 1 diabetes. I'm guessing at least 97% of you have. Now let me know if you'd ever heard of aplastic anemia before learning of Aaron. I'd put the percentage at less than 8%. Everyone has a diabetes story or connection. No one has an aplastic anemia one. 

But to our doctor, it's a well-known disease. This makes sense because he has a significant amount of interaction with it every week. That little exchange made me realize how much our own worlds are made up of the things we know. We have a difficult time imagining that someone could know so little about something that consumes so much of our time.

During this same conversation, I mentioned that I would be totally fine if they gave my number to any parents who wanted to talk to another family with this disease. When Aaron was first diagnosed, I begged the social worker to reach out to another family on our behalf so we could connect with someone else who was going through the same thing we were. She reluctantly agreed to ask one family if they'd be willing to talk to us, and this resulted in a treasured friendship that has been such an immense blessing. 

But when I mentioned my willingness to be this same kind of person to another family, our doctor just said, "Yeah, I guess we could see about that. I'm sure there's a Facebook group or something like that though." 

In contrast, the diabetes world is all about connection. Everyone knows someone who has it, and they are all happy to share their stories, tips, advice, and good vibes. Within the clinic, there is a social worker that comes to every appointment because they realize that mental health is such a vital part of managing diabetes. There are support groups and summer camps and tons of resources.

This past Friday, Mike and I went to a diabetes class. Aaron was supposed to come too, but he had spent seven hours at the hospital on Thursday for an appointment and blood transfusion, so we let him off the hook. The only people in this class were Mike and me and the diabetes educator, so it was very tailored to Aaron's specific situation. It was so helpful, and we came away feeling empowered to help Aaron manage and live with this. 

Meanwhile, on the bone marrow side, we are awaiting the results from Aaron's first chimerism, and I'm nervous. His counts continue to be very low. His neutrophils were 1500 on Thursday, which isn't bad, but I'm not sure how much I can trust it since he's been getting neupogen fairly regularly. I think we'll have a better idea this coming week of how well they're holding on their own since it will have been over a week since his last injection.

His platelets were at 22 on Monday and 15 on Thursday. I am so hopeful that they will have gone up instead of down when we check them again in a couple of days. (With his first transplant, his platelets were the first ones to come in, and they were already almost to 200 by this point.) 

His red blood cells are not doing much either. On Monday, his hemoglobin was 7.6. On Thursday, it was 7.5. Aaron was so exhausted he could barely walk across the room without needing to rest. So they decided to transfuse him rather than risk him going any lower.

Dr. R. assured me that a slow rebound of counts is totally normal, especially for kids with aplastic anemia. But I could tell he was not completely satisfied with the rate of progress so far, even though he adamantly denied feeling this way when I questioned him about it. So then I asked him, "Well then, when will you begin to be concerned?" And he said, "If the chimerism comes back and the neutrophils are not 100% donor, then I will be worried." 

So now I'm worried.

I guess I just want some kind of sign that things are all going to work out. I want evidence that the results of the transplant will be different this time. I want to take a peek into the future and know that all of these months and months of pain and struggle resulted in something good. I want the doctors to look at Aaron's labs and say something like, "Oh yes, see this number here. We never saw that with the first transplant. We've got it this time, so everything will be okay."

We believe that Aaron's bone marrow failed because he still had a small percentage of his own T-cells, and once he was no longer on the immunosuppressant, they woke up and wiped out his bone marrow. I have long said that if I don't see those T-cells become 100% donor, then I will never be able to trust that this might not happen again. But when I mentioned this to Dr. R., he burst my bubble by saying, "Aaron will always retain some of his T-cells. They will never be 100% Maxwell's. That's just the way it is." 

So I countered, "Then does he need to stay on the immunosuppressant his whole life?" Dr. R. said no--once the bone marrow is strong and active again, it can hold its own against any residual T-cells. 

But--and I don't think I should have needed to remind him of this--that's not what happened last time. I am terrified of these T-cells and their destructive powers.

Dr. R. must have heard the note of desperation in my voice as I asked these hard questions that have no answers. He said, "Amy, I wish I could guarantee that it would work this time, but I can't. There are no guarantees." 

And that is what I am struggling this week. There are no guarantees. Not with this transplant. Not with Aaron's health. Not with my other kids. Not with life. There are no guarantees. 

I've been listening to the book, Untamed, this week. It's a memoir by Glennon Doyle, and she wrote of how difficult it was to make the conscious choice to stop desensitizing herself through alcohol and binge eating and start feeling all parts of life, even the really hard ones. She said, "Surprisingly, now that the ache has transformed from idea to reality, I feel relatively steady. Dealing with a dropped shoe is less paralyzing, apparently, than waiting for that shoe to drop." 

When Aaron was first diagnosed, the shoe dropped, and we dealt with it. When he relapsed, the shoe dropped again, and we dealt with it. But now we're approaching the stage where we might not be dealing with it in a 24/7, survival kind of way anymore.

And because of that, I live in daily fear of the shoe dropping again. 

Even though I know that if it does drop, we can put our heads down and deal with it again.

But I don't want to deal with it again.

A couple of weeks ago, I was revisiting President Nelson's most recent conference address. He gave five suggestions for how to increase our faith. The third one of these was "act in faith." He asked this interesting question, "What would you do if you had more faith?" 

I have thought about this question dozens of times and come up with many different answers. But one day when I asked it of myself yet again, the answer that came back was bright and intense, a burning truth: I would submit.

If I truly had more faith, then I would submit to God's will. I would acknowledge that He hasn't left me alone in the past, and He won't leave me alone in the future. I would recognize that some of my favorite blessings have not been a result of my own desires but because He had a better plan. I would relinquish my insufficient attempts at control. I would stop agonizing over every little win or loss and view the big picture. I would trust Him enough to take a deep breath and place it all in His hands.

Submitting is not the same thing as giving up. Not even close. Rather, it is realizing that God is always at the helm and that the voyage will go a lot more smoothly if I don't try to rip the steering wheel out of His hands. 

I am an active participant. I complete every task, I ask questions, I make decisions, I work hard. But at the same time, I release myself from the pressure of fixing everything. I exercise hope and allow myself to feel peace even in the midst of uncertainty. I watch for the miracles because I have every assurance that they will come.

This is how to submit.

. . . Or, at least, that's what I've been telling myself.

Putting it into practice is another matter entirely. It's so hard, but I'm trying. With each little disappointment, I remind myself to let it go and see what God can do with it.

Maybe Dr. R. was wrong. Maybe there actually is one guarantee. And maybe it has everything to do with giving the control back to God.  


  1. You and Mike are the perfect examples of faith and how we admire you!! Those T-cells have to behave themselves!! Love your sweet family!!

  2. Beautiful. I feel the same way.

  3. Yes, definitely heard of diabetes, though I sometimes get the types mixed up. My father-in-law has diabetes. And no, never heard of aplastic anemia (my phone doesn't know how to spell that) before Aaron.
    Your thoughts are inspiring, as always. That kind of submitting kind of haunts me, to be honest. Have you ever read The Dreamgiver?

  4. The thing you mentioned in the end about submitting rings true to my own experience. When Scott was really sick, for the first week I felt so incredibly heavy that sometimes I couldn’t breath. There was a very specific moment that will always be etched into my memory where In prayer I realized I had to submit. In that moment a great weight was lifted. And it carried me through. I knew from then on that no matter what, it would be okay. Maybe Scott wouldn’t live, maybe he would be severely handicapped, but we would be okay.

  5. Right on, Amy. We are here with you

  6. I love how you are helping connect families with children with aplastic anemia. What wonderful support you can give and (hopefully) receive. And in my 20+ years as a general pediatrician, I have had over a dozen kids with new diagnoses of type 1 diabetes and only one with aplastic anemia. Back then, we didn't have much social media, and I am grateful for it now, to connect families and share insights and hope. We continue to pray for Aaron and your family!

  7. Beautiful beautiful! I needed this post. Love you fiercely.

  8. So beautifully written with an incredible perspective! We continue to pray for Aaron and your family. I’m so impressed that you’re able to document not only your journey with Aaron’s health, but also lots of fun family memories! Thanks for sharing what real faith looks like! Hope Aaron makes good progress.


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