Breadcrumbs

I have a lot of things to write about this week, but disappointingly, none of them contain the word "engraftment."

Engraftment is marked by the appearance of neutrophils (a type of white blood cell). Aaron needs an absolute neutrophil count (ANC) of 500 (0.5) or above for it to qualify as engraftment. Technically, this number needs to be sustained for at least three days to be considered legitimate, but the first day of 500 is usually given the honor.  

Ever since Aaron relapsed, he basically hasn't had any neutrophils (hence, all of the recurring fevers in the weeks leading up to transplant). If you look up anything about a neutrophil count of less than 500, you will find only scary things, like "indicates a severe risk of life-threatening infection." Even though he was at home for months in this state of "severe risk," the doctors won't chance it now because his brand new bone marrow is trying to take hold. So even though he is doing really well, this number is absolutely non-negotiable: his ANC has to be above 500 in order to go home.

We got a little teaser yesterday--a glimmer of hope that things are trending in the right direction: the neutrophils showed up! His ANC was 200, which means we need a few more to make it a real party, but it's a start. 

Those neutrophils were all that Aaron could think about yesterday. He was practically giddy. Even by 9:30pm, he still had so much energy that he pulled out the little pedal contraption that the physical therapist brought over and cycled away with a big grin on his face. He kept saying things like, "Maybe my neutrophils will double tomorrow! I mean, I know that might not happen . . . but then again, it might! Maybe I'll get to go home soon!"

But sadly, those neutrophils just wanted to stay where they were, and they didn't budge a bit today. This feels all too familiar to last time when Aaron made small gains but then plateaued for several days at a time. The doctors are always quick to reassure us that this is pretty common in kids with aplastic anemia. Even before the chemo and radiation did their job, Aaron's bone marrow was pretty much destroyed. This damage takes time to repair. The scaffolding must be put back in place before the real building can begin. 

Even so, we know that some kids (even ones with aplastic anemia) engraft in a rush. The neutrophils leap up, growing exponentially each day--a veritable beanstalk. But Aaron's process feels more like a trail of breadcrumbs. He gets one tiny morsel and then has to walk through a dark forest before finally stumbling on another one. He'll reach the prize eventually, but we don't know how long the trail will last. 

But even though engraftment is taking its own sweet time, some things are happening right on schedule. You might have already noticed from the above photos that Aaron is sporting a new look this week. Last weekend, his hair started to fall out. We let it go for a couple of days, but on Monday, it started to get annoying. It was all over his pillow and sheets. It was falling onto his cheeks and getting into his mouth. It wasn't to the point that it was coming out in handfuls, but he was done with it regardless.

I had entertained a brief hope that he might avoid losing his hair this time, but it was not to be. And honestly, once it started to come out, it wasn't a difficult decision to just shave it all off. I think the first time you lose your hair, you're a little nervous about what you're going to look like. But we already knew that he was just as dashing without hair as with, so Mike picked up the clippers and hacked away at it with relish.

But the thing we've actually been consumed with this week hasn't been hair, or even engraftment, but glucose.

Remember last week when I mentioned that they put Aaron on TPN (IV nutrition) because he wasn't eating enough or retaining calories? Well that seemed like a great idea (and I really do think it helped get his nausea under control) until we noticed his blood glucose level climbing. Once he wasn't feeling so sick anymore, his appetite came back, and so he was on TPN while also eating a fair amount. The natural solution was to take him off of TPN, which they did immediately on Monday morning when his blood glucose was 360 (yikes). 

We saw almost instant results. A few hours later, his glucose was 260, and the next morning it was below 200. But then, inexplicably, it shot back up. We tracked it closely over the next two days, and it was all over the place, but it never fell into a normal, or safe, range. 

We met with an endocrinologist, who was as baffled as everyone else. Aaron did not check any of the boxes for hyperglycemia: he was not on steroids; he was not overweight; he was not in an intense amount of pain; he didn't have a history of high blood sugar.

We can look back at his labs over the last few months, and there is an obvious correlation between when they put him on TPN and when his blood sugar went up. But now that he's off of the TPN, it won't come back down, and no one knows why.

Of course, the obvious question is, Did Aaron somehow get diabetes over the course of three days? That sounds absolutely ludicrous, but at this point, it is a serious consideration. One thing the endocrinologist asked was, "Does anyone in your family have an autoimmune disease?" And while the answer is no, Aaron himself has an autoimmune disease. Could the one somehow make him more prone to the other?

They are running a battery of tests to try to put the pieces together and figure out what happened. Interestingly, one of the tests they were going to do was an A1C. Those of you familiar with diabetes will know that this test can look at your average blood glucose level over the past three months. This is because red blood cells typically have a lifespan of 120 days.

The doctors were all set to run this test when Mike pointed out an important fact that seemed like it should have been obvious to them: Aaron has been living on transfusions for the past three-and-a-half months. Every week or two, he gets another transfusion of someone else's blood. An A1C would not be an accurate reflection of his hemoglobin at all. The results might be interesting, but they probably wouldn't provide a clear timeline of what, if anything, has actually been going on.

But even though we have to consider the possibility of diabetes, all of the doctors seem to think that the most likely explanation for this wacky blood sugar is stress. If you walked into Aaron's hospital room at this very moment, he would not look like a kid who is under a lot of stress. He is extremely chill--working on Legos or watching a show or listening to a book. Two weeks ago, he would have seemed stressed, but not anymore. But even though he doesn't look it, or even feel it, the reality is that his body has been (and is going) through something major. And perhaps it is manifesting this stress internally through his blood sugar rather than externally through pain.

So right now, they are managing it with frequent glucose tests and insulin as needed. (In honor of all of the insulin, we had to revisit this Studio C sketch, one of my all-time favorites.) This isn't something that will keep him from coming home. Mike and I might just have to learn how to give insulin shots.

Aaron might not be visibly showing signs of stress, but I certainly am. Every time they check his glucose, I tense up in anticipation of a high number. I am not a fan of unanswered questions, and that's what this is: one big, fat unanswered question. Everyone is baffled by it, and that doesn't bring me a lot of comfort. 

But the thing that does bring me comfort is that this is somehow all going to work out. We are not beat yet--far from it, in fact. We're continuing to inch a little bit closer, picking up those breadcrumbs, taking any small gain and counting it as a win. 

I was listening to a talk earlier this week, and there was one sentence that almost knocked me over with its mind-blowing possibilities: "Faith in Jesus Christ accelerates and magnifies all healing" (Elder Kyle S. McKay in a recent BYU devotional). Oh man, I like those words: accelerate and magnify. And even though I know my definition might not quite match up with an eternal definition, I still believe that we are seeing our own personal fulfillment of this promise. 

Every day we are acting in faith as we find the next breadcrumb and move forward a few more steps. And when we look back, we will see that our efforts have been accelerated and magnified in ways we never could have dreamed.