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.  

The Long Haul

May 23, 2021

I don't know how frequently I'll be posting updates on Aaron now that he's home from the hospital and we're settling into the long haul that is "post-transplant." I actually hope that there won't be too much to report on because that will mean that things are going well.

In talking to people over the last week, I know there are some misconceptions about Aaron's recovery, particularly with the timing of it all. We don't expect anyone to fully understand what is required following a bone marrow transplant, so we are never bothered if we need to answer questions--we are mostly so grateful that people are interested in him and care about how he's doing.

But I thought it might be helpful to map out and explain some significant milestones in the process:

April 23, 2021: Bone marrow birthday

May 13, 2021: Engraftment

August 1, 2021: Day +100

October 23, 2021: Tapering of immunosuppressant begins

January 23, 2022: No more immunosuppressant

April 23, 2022: One-year anniversary

Aaron is on a drug called tacrolimus, which I've written about many times before. This drug suppresses his immune system (specifically the T-cells), which helps prevent graft rejection. The goal is to keep the donor (Maxwell's) cells from attacking the recipient (Aaron's) cells. 

Sometimes, even being on an immunosuppressive drug, this can still happen, leading to a host of problems (some short-lived and mild, others severe and long-lasting) known collectively as Graft-versus-host-disease (GVHD).

Our job right now is to keep Aaron as healthy as possible so that his body can work on growing these new cells instead of attempting to fight an infection or illness with a weakened immune system. He is on a low-microbial diet (no restaurant food, soda machines, raw fruits or vegetables that cannot be easily washed, communal bags or jars, etc.). The house must be kept extra clean. He can't work in the garden or be next to a campfire. We can't do any type of home construction/remodeling. He can't be in the same room if someone is dusting or vacuuming. And of course, the most obvious one: no sick people in the house. 

This is a balancing act because we have other children besides just Aaron. We must keep Aaron home and sheltered (except for exciting appointments at the hospital), but the rest of our kids need to still go about their lives to a certain extent. This comes with risk because they could easily bring something home, but we are trying to be as careful as possible. We are carrying on with some of our activities (school, church, small playdates) and avoiding others (family vacations, big parties, tons of extracurricular activities). 

Even though it seems like we're saying no to a lot of things, we actually feel quite fortunate because we're able to be home. Primary Children's takes care of kids from all of the mountain west states. Following a bone marrow transplant, you have to live no more than an hour's drive away from the hospital for the first 100 days. This means that many families have to find other accommodations for another two to three months after being discharged from the hospital. 

The road after transplant is a precarious one. When people ask how Aaron is doing, Mike likes to say, "It's like we're walking on the edge of a cliff." Things are going fine right now, but they could turn quickly and with very little warning, which is why close proximity to the hospital is essential.

100 days post-transplant is significant because several things usually happen: you get to say good-bye to the low-microbial diet; your central line gets removed; you are past the most vulnerable time with GVHD; and you get to start coming off of the immunosuppressive drug . . . or maybe not.

It is my understanding that patients who have leukemia start being weaned off of the immunosuppressive drug around 100 days. I think this is because they need the immune system to start working again as soon as possible to continue to fight the cancer cells. 

But with a non-malignant disease like Aaron's, it is actually better to keep his immune system suppressed for longer to give the bone marrow a chance to become strong and fully-functioning before allowing the T-cells to wake up. Last time they waited until he was six months post-transplant before beginning to take him off of tacro. I have not specifically talked to his doctors about this, but I am assuming it will be the same this time.

I realize I just gave you a lot of boring information, but hopefully it provided a clearer picture of the next few months and explained why Aaron can't resume all of his normal activities even though he has already had the transplant.

The other thing I thought I'd talk about is what our daily schedule looks like. This might be more for me than for you since I hope to be able to look back at it in a few months and see some progress:

8:30 am: Aaron wakes up (or gets woken up by me).

8:35 am: Check blood glucose. Give insulin if needed. Eat breakfast. Count carbs. Record all numbers on spreadsheet.

9:00 am: Take tacrolimus and other meds.

9:05 am: Flush and heparin lock central line.

9:00 am - 12:00 pm: If it is Monday or Thursday, go to hospital for appointment. Get transfusions and/or neupogen if needed. If it is Tuesday, see the home health nurse for a dressing and clave change on his central line. If it is Wednesday or Friday, stay home and try to convince him to do schoolwork.

12:00 pm: Lunch time--do all of the same things we did before breakfast.

2:00 pm: Take mycophenolate (another immunosuppressive drug that he has to take three times a day; he will only be on this one until Day +35).

2:00-4:00 pm: He has usually maxed out on school by this point and reads, watches a show, or builds a Lego set.

4:00 pm: The other boys get home from school. They immediately wash their hands and change their clothes to minimize germs.

5:00 pm: Dinner. Repeat all of the glucose/insulin/carbs steps from above.

7:00 pm: Start magnesium infusion. He gets this every night through his central line. It runs for two hours.

8:00 pm: Start micafungen infusion. This is an anti-fungal medication. He gets it every night through his central line. It runs for an hour. Because he has a double lumen, he can get both this and the magnesium at the same time.

9:00 pm: Take tacro and other medications.

9:05 pm: Flush and heparin lock central line.

9:15 pm: Give him long-acting insulin

10:00 pm: Do one last glucose check. Give insulin if needed.

10:30 pm: Go to bed.

These are the things that stay fairly consistent every day. There are variations (although not too many since we're not really doing anything) in the in-between hours.

So far, we haven't seen too much action with his blood counts. His neutrophils are going a little crazy (1700 on Monday, 600 on Thursday, 3500 on Friday), but that's because he's been on and off and on neupogen, so I feel like I can't really trust them yet. He needed platelet transfusions on both Monday and Friday. He didn't need a blood transfusion this week--his hemoglobin didn't go up but managed to stay fairly steady. 

We had a little bit of drama with his tacro level this week. At each appointment, they check to make sure it's in the range they want (which I think is between 8 ng/mL and 12 ng/mL). When Aaron was discharged last Friday, his tacro level was 16.5, so they told us to skip his night dose and then lower his dose by 0.3 mg. They suspected his central line might have become contaminated, and so they order a peripheral blood draw at his appointment on Monday.

Sure enough, the peripheral draw indicated that his tacro level was less than 2 ng/mL (which meant that the labs from his line had been artificially high), so they immediately increased his dose. I was pretty frustrated by this for a number of reasons: While Aaron as in the hospital and getting tacro through his central line, Mike and I were absolutely militant about checking to make sure it got put into his purple lumen only so that the red lumen could stay clean for blood draws. Somehow the red side got contaminated, and I know for certain this wasn't caused by tacro being put into it. So there has to be another way that tacro can cross over to the red side (maybe through back flow or checking for blood return, although they say they've seen lines get contaminated even after switching to oral tacro). 

This feels like something that would be worth figuring out since it can lead to dangerous situations, as in Aaron's case: They thought his tacro level was high, but when they did the peripheral check, they found out it was actually extremely low. Personally, I feel like they should have done a peripheral check much earlier, even before his level was "high," just to make sure it was matching with the draw from his line. This seems like it should be standard practice, but when I mentioned it to the doctors, they said, "We don't want to subject him to a poke unless it's absolutely necessary," which strikes me as extremely ridiculous since they have no problem drawing more and more labs at any other time. But for some reason, an extra poke seems like a worse tradeoff than GVHD. It makes no sense to me.  

I think one of the hardest things in all of this is watching everyone else come out of the pandemic and quarantine. The masks and restrictions are going away and normal life is being resumed, but not for us. We went into this quarantine state in August 2019. In March 2020, Aaron started coming off of tacro and we were just about ready to reemerge when the pandemic shut everything down. Now the pandemic is coming to a close (hopefully), but we are at the beginning of another transplant. It all just feels never-ending and like we will never get to go places or do things without masks or a sense of caution. 

But enough of all of that. This post has become much longer than I anticipated. I wasn't planning on sharing so many details, but now that they're there, I guess I'll leave them so I'll have them for future reference. 

The truth is that in spite of all of the appointments and blood tests and daily care, we're enjoying life at home so much. It's so nice to be able to go on a date with Mike or eat dinner together as a family or go on a walk around the neighborhood. There are many restrictions, but we still feel free. 

Endure it Well

May 16, 2021

For the last four weeks, my heart has given a little pang each time I set the table and only needed five plates instead of seven. I have felt those two missing plates very acutely. The table has felt empty and dinner has felt more like a chore than a ritual. 

But on Friday night, I counted out seven plates and placed them around the the table, all in their correct places, the gaping holes filled up once more. That's because Aaron came home! 

At the beginning of the week, his doctors said, "Our goal is to have you out of here by Friday." But when his ANC dropped back down to 200 on Tuesday after a small increase on Monday, I didn't want to get my hopes up.

However, it regained its upward trend on Wednesday with 400, and then finally hit the magic number of 500 on Thursday (Day +20).    

Knowing that home was on the horizon made all of us happy . . . until the endocrinologist came in. She said that Aaron's antibody tests had come back, and two of them were positive for Type 1 diabetes. The news wasn't exactly a surprise since we were already aware that something was off with his blood sugar, but as she started piling on the information ("we need to start carb counting today," "come back in two weeks for a diabetes class," "track his numbers on this sheet and email them to us," "give insulin according to this chart"), I felt like I was in a daze. Even though we had already been doing multiple glucose checks every day and giving Aaron insulin shots, it had always been with the understanding that this was probably medication-induced and therefore temporary. But I've always heard that there is no cure for Type 1 diabetes, so when she said those words, it felt like there was no way to retract or undo them.

I didn't have a good enough grip on what she was saying to actually ask any intelligent questions, but there were enough "ifs" and "we'll sees" thrown around that I said something like, "So is there a chance that he doesn't actually have Type 1 diabetes?" And she responded, "With those antibody markers, it's pretty certain, but I'd hate to tell you he has it and then have to change that." I reassured her that this would be good news, not bad.

The two teams (endocrinology and bone marrow transplant) have different views about this diagnosis. From an endocrinology standpoint, Aaron has Type 1 diabetes. They are treating him as if he has it. But from a BMT perspective, they are more open to other possibilities. They have not seen anything quite like this before, and consequently, they don't have answers. But one thing they do know is that things can be quite unpredictable after a bone marrow transplant and even though this is not one of the "normal" things they frequently see, it is almost certainly related to everything that has been going on over the last two years. Their approach for right now is, "Wait and see." 

So that is what we're doing. We did all of the diabetes training before we left the hospital. We watched videos and took quizzes and consulted with doctors and nurses and practiced doing glucose checks and gave insulin and read labels and added carbs and learned what to do in case of an emergency. Immediately after the endocrinologist left, Aaron and I both started to cry independent of each other. It felt like this latest thing might just be the thing that broke us.

But then we started doing all of the things I just mentioned, and there is something about action that just feels so good. Instead of letting the waves drown us, we started swimming, and we discovered that with each stroke, we felt just a little bit better. In fact, by the time the dietician came in on Friday, I was saying things like, "It feels time consuming and overwhelming right now, but I know that after a few weeks, it will have become second nature, just like everything else." These were things I never could have imagined myself saying with such confidence 24 hours earlier. 

Before Aaron was admitted to the hospital for his transplant, I asked my sister-in-law, Kirsten, if she would put some words on a poster for us. They came from a verse in Doctrine and Covenants 121: "And then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over all they foes." I loved the phrase, endure it well. Kirsten put those words above an abstract rendition of our beloved Mt. Olympus. 

Maybe you've noticed this poster in some of the photos I've shared over the last four weeks. It was a constant but subtle reminder of how we wanted to act. To endure something well was so much more than just enduring (although sometimes simply enduring had to be good enough). I never overtly reminded Aaron of our goal, preferring to let the poster speak for itself, which it did. But I saw evidence over and over again that he was choosing to "endure it well" instead of just "endure." 

Perhaps this was no more obvious than when he faced this diabetes maybe-diagnosis head on. After his initial tears, he rose to the challenge. Without any prompting from me, he asked to check his own glucose--poking himself with a lancet, squeezing out a drop of blood and nudging it onto the testing strip. He took the insulin needle and plunged it into his stomach. He paid attention to what he was eating, often figuring out how many carbs before I had a chance to. He absorbed and understood an impressive amount of knowledge in a very short time. Watching him consciously choose to "endure it well" has been an inspiration to me and helped me continue forward as well.

I am always on the lookout for tender mercies because they let me know that God is not abandoning us or expecting us to face this challenge alone. One of these tender mercies came in the form of our nurse on Thursday. We actually had two nurses that day: Joanna and Amy, who was transferring to the cancer/transplant unit from the medical unit. Normally when a new nurse is being trained, they are noticeably less confident as they try to learn the new ropes. 

But in this particular case, Amy had the exact skills that we needed--and they were skills that didn't seem like they would necessarily be required on the cancer/transplant unit. Because Amy had been on the medical unit, she had worked with many patients facing a Type 1 diabetes diagnosis. She knew exactly how to teach us. She was able to answer all of my questions. She made the scary seem totally manageable. Joanna, who was supposed to be the trainer, deferred to Amy on more than one occasion: "This is Amy's field of expertise. I'll let her take over." 

I am getting emotional just typing these words. What a gift this was to feel so secure and supported on a day where we could have felt very frightened and overwhelmed. No one knew that we were going to get a Type 1 diagnosis on that day, and yet we got the one nurse who was prepared with the information and skills that would ease our anxious hearts. Isn't God so good?

And then, as it turned out, just when I was feeling ready to tackle this whole "dosing for carbs" thing, we took his blood sugar before lunch on Thursday, and it was only 94. The endocrinologist told us to hold off on the insulin. That was the lowest number we had seen in over two weeks. They told us we should practice counting carbs, but at the moment, they didn't want us to give him insulin for them.

Ever since then, his glucose has been pretty stable. He is getting long-acting insulin every night before bed, but that seems to be all he needs to keep his numbers in a safe range. We're not quite sure what to make of it. The endocrinologists seem to think it might be the "honeymoon period" they often see in newly-diagnosed diabetics. The transplant doctors think things might be settling down and resuming their normal function. Again, we will wait and see.

And now, back to Friday. Aaron's ANC was still 500, and so the team said they would discharge him. A bunch of things needed to happen before then: blood and platelet transfusions, pentamidine infusion, medications to sort out, and more diabetes training.

Aaron was like a caged lion. Everything was taking too long. He knows too well how discharges often go. There always seems to be one more person who needs to sign off on something or needs to talk to us. In this case, we encountered a couple of hurdles with medications. One of them was for mycophenolate, an anti-rejection drug that, due to insurance issues, had to come from a pharmacy in Indiana. The other was for neupogen, which Aaron is still getting until his ANC reaches 2000. This was supposed to come in the form of daily shots that we could give to Aaron at home, but we couldn't get them in time because of snags with the insurance. They said Aaron would have to come in for shots on Saturday and Sunday, and we agreed without question. Anything, if only he could come home.

Aaron made it very clear that he was leaving when the pentamidine was done--with or without us. We did our very best to get everything done while the infusions were running, but we didn't quite make it in time. Mike was still trucking things out to the car via a wheelchair (or "transport device," as the nurses referred to it). And then he got held up at the pharmacy as he sorted out sixteen prescriptions, some of them duplicates and not actually needed. Luckily, by that time Aaron was assured that the discharge was actually happening, so he cut us some slack and waited patiently.

But finally, the room was empty and we had the discharge papers in hand. Before exiting the unit, we took around a basket of chocolates to all of the nurses and staff. It gave us an opportunity to say goodbye and thank you. Really, those nurses have our whole hearts.

Aaron had a noticeable bounce in his step as pushed his way through the doors. We walked out into the sunshine. The air was hot and dry. Contrary to what the calendar said, the seasons had changed from spring to summer during our time in the hospital. 

As we came around the bend in the road and saw our house, there were welcome home banners on the front windows, church friends across the street, and brothers jumping energetically in the front yard. I honked the horn in celebration, and the boys mauled Aaron as he exited the car. They couldn't get enough of him. It was the sweetest reunion. 

We still have a long way to go, but we are happily entering a new phase in this journey. Aaron's relapse and all of the hospital stays that came with it made up phase one; the conditioning, bone marrow transplant, and engraftment encompassed phase two; and now we're in phase three, which will consist of isolating as much as possible, keeping a close eye on counts and any signs of GVHD, and hopefully moving closer to full recovery.

Even though we're not done yet, we are still breathing a big sigh of relief. We feel like we can do anything, now that we're together again. 


May 9, 2021

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. 

Compare and Contrast

May 2, 2021

Yesterday, Mike called. He said, "Tell Aaron to look out the window." Aaron was confused. "This window?" he asked. He looked out, and then he looked down. There stood the cutest little band of brothers holding up letters to form the word "Aaron." 

They waved back and forth, and then Aaron said, "I wish they could come up here." The separation has been one of the hardest parts through all of this. Mike and I don't feel it quite as much since we trade back and forth, but the boys are all feeling it hard. 

We don't know yet when Aaron will be able to go home. It depends on a number of factors (the biggest one being engraftment), but the doctors don't like to make guesses on hypotheticals. I don't know why--it's not like I'm trying to get them to sign a contract or anything. I just want to talk through certain situations, such as, "If Aaron engrafts on Day +14, will he need to stay in the hospital for a few more days or is there a chance he might be able to come home that same day?"

I'm asking partly because I need to be prepared for his arrival home. Last time, he didn't engraft until Day +23, but then they ended up discharging him on the same day, which made for a mad scramble at home to get the house ready for him. I'm trying to avoid such a scramble this time.

Even though he engrafted late last time, that is not in any way an indication of what will happen this time. In fact, the doctors are pushing for early engraftment. The day after transplant, they started him on neupogen (a drug that helps stimulate the growth of neutrophils), and he's received it every day since then.(Last time, they didn't give him any neupogen at all until Day +22.) We haven't seen any neutrophils yet (as expected), but the ground is being prepared so that when those cells start to come in, they will have a fertile place to grow. 

With the first transplant, the team acted like it was important for Aaron to build a strong graft on his own and that slower was usually better, as it lessened the risk of GVHD. This time, they seem to think any neutrophils are better than none, so the sooner he can get some, the better. (I think this change in the plan has less to do with Aaron's failed first transplant and more to do with a new doctor being added to the team who has his own ideas of the way things should be done. However, since it did fail the first time, I'm up for any changes they want to make. Let's not do the same things and get the same results, am I right?)

There have been a number of other differences as well. At the beginning of the week, Aaron was mostly sleeping and not eating (and what he did eat tended to eventually come back up). When they got his weight on Monday, I noticed it had taken a hit. I called Mike and said, "I bet they're going to want to start him on TPN [IV nutrition]." And sure enough, the first thing the nurse practitioner said when she walked in was, "We're going to start doing TPN tonight."

Aaron never had to be on TPN last time. It always surprised the nurses since it is pretty much a given with bone marrow patients. So when they put him on it this time, everyone just acted like it was par for the course and not a big deal at all, but it felt discouraging to me since it was one more thing that needed to be running through his central line all of the time (and also, it was one more thing that would eventually need to be checked off and removed). However, in spite of my reservations, I think it was definitely the right decision. It took the pressure off of Aaron to consume a certain number of calories (which was absolutely impossible for him anyway), and it also helped to stabilize his blood sugar, which seemed to have the added benefit of minimizing his nausea. So all in all, a positive thing, and as the week has gone on, he has gradually felt like eating more.

Another thing that has been different is his need for oxygen. At first, it seemed to be the ATG that was causing his oxygen level to drop, but now it's more likely because he has spent so much time in bed that his lungs have partially collapsed. His oxygen level is fine when he is sitting up or moving around, but anytime he falls asleep, it dips back down. So oxygen has become another one of his (many) companions during the night.

I went home on Monday night, and Mike took my place. It had been a very lonely weekend. Aaron had slept for almost all of it, and even when he was awake, he didn't say a word. He had a mild case of mucositis (a side effect of chemotherapy). He didn't get horrible mouth sores, but he had a lot of thick secretions that made him feel nauseous and gag if he tried to talk. Mike had taken the boys to southern Utah for his grandma's funeral, and so I couldn't even FaceTime with him the way I normally do. Although it was easier in some ways to have Aaron sleeping through the discomfort, sitting in a darkened hospital room for hours on end was not the best for my mental health (and I'm an introvert who generally craves quiet, so that's saying something). 

On Tuesday, Aaron was back to being awake, but not for a good reason. The palms of his hands (and after awhile, the soles of his feet) started to itch. If you've ever had uninterrupted itching, you know it can make you feel like you're going crazy. And that's how it was for him. It was so bad, he couldn't even fall asleep, even after he'd been awake all day and was on two different drugs that should have made him tired. Mike was at the hospital for all of this, and he was frantic to try to bring Aaron some relief. The team said it was the tacrolimus (immunosuppressive drug) that was causing it. This was the same drug that Aaron was on with his first transplant, but he never had any side effects with it back then.

He gets tacro twice a day, and it's an infusion that runs over the course of two hours. When he goes home, it will be switched to an oral version, which we are very familiar with since we gave it to him for eight months. Apparently, it's the iv infusion that causes itchiness, and this is usually not a problem with the oral. So of course we asked the obvious: could he just switch to oral now? But they wouldn't even consider it. They said they can't risk having the immune system wake up while he's trying to engraft.

So instead, they tried a couple of other things: they lengthened the infusion time to three hours instead of two, and they also put him on an antihistamine. Mike also made him lots of ice packs, which helped to lessen the discomfort. Thankfully, these things seemed to do the trick, and the itchiness has diminished almost completely. Another side effect from this drug this time around is tremors in his hands, but since they're not inhibiting his ability to build with Lego, he doesn't seem to mind. 

Speaking of Lego, we've decided that the best way to gauge how well Aaron is feeling is by the number of Lego sets he can churn out in a day. Last week, it took him four days to build the San Francisco skyline. It was painful to watch. He couldn't focus; he was exhausted after putting together just a few pieces; and he couldn't manage to sit up without feeling nauseous. In contrast, just yesterday he put together the London skyline (a very similar set in terms of size and style) in a single sitting (less than a couple of hours).

This weekend he really seemed to turn a corner. He doesn't have his teenage boy appetite back, but he is eating little bits throughout the day. He has been up and out of his bed and has even done short sessions of physical therapy (without the physical therapist). He has been brushing his teeth and doing his mouth care with only minimal complaining (a huge step). Yesterday he didn't throw up at all. And of course all of this means that he has been blowing through the Lego. 

But maybe the best improvement is that he has turned back into "nice Aaron." He is chatty with the nurses and doctors (and me!). He smiles a lot. He asks politely for things. He is affectionate. He is rational and agreeable. These are all things that have been mostly missing over the last couple of weeks. (When I got home last Monday and the other boys rushed to give me hugs, I might have exclaimed, "Oh yes! It is so good to be with boys who like me!") I am not saying that his silent, unpleasant demeanor was unwarranted or not understandable. Quite the opposite. But every time he gets sick and irritable and silent, I worry that this illness has forever changed his temperament, so it is always such a relief when he becomes himself again.

This experience has given me more compassion for people in general. President Eyring once shared something he had been taught: "Hal, when you meet someone, treat them as if they were in serious trouble, and you will be right more than half the time." In Aaron's case, people are generally very compassionate because it is obvious that he is quite sick. They don't take it personally when he doesn't answer a question or has a scowl on his face. They blame the way he is acting on the hard thing he is going through, not on himself. But when a challenge is silent and invisible, as so many are, it is much easier to assume the worst about people instead of giving them the benefit of the doubt.

On Friday we hit the two-week mark in the hospital. This meant that we had to take everything out of Aaron's room so they could give it a deep clean. For such a small room, it is amazing how much we can still pack into it, so it was an all-morning affair. They moves us to a different room in the same pod but on the opposite side. I took down all of the pictures on the walls and packed up everything from the closet and drawers. We helped Aaron out of bed and found his long-neglected flip flops and walked the short distance to the new room. You would think that hospital rooms would be pretty much the same, but we instantly noticed some differences: the walls were bright yellow instead of cool blue-gray; the view from the bed and couch was of the hospital and a gravel roof; the west sun was pouring in through the window; and the "Lego shelf" was six inches shorter. 

We were both disappointed but agreed that we could handle it. I just hate making things more difficult for people, and it seemed like asking for a different room would surely  for someone. However, as I started to unpack, I thought, Why don't I just ask if we can have his old room back after they're done cleaning it? It can't hurt to ask, and if I don't mention it now, it will be too late. I pictured myself walking past his old room every day and feeling so jealous of whoever got it after him. It didn't seem like it should be a big deal, but for some reason it was, and the more I thought about being in that room for another week or two, the worse it seemed. So I quickly called in the nurse and, very apologetically, asked if we could have Aaron's old room back. And she said we could. No one had been assigned to that room yet, so after it was cleaned, we hauled our stuff back over. "Home" never felt so good. 

Where we were once disgruntled about being in a hospital room, we were now overjoyed that as long as we had to be in the hospital, at least it was in this room. We sat on the couch and looked out at the capitol and said, "Isn't this view amazing?" We admired the calming color of the walls. We appreciated the perfect, muted light. We filled up the Lego shelf and exclaimed, "Aren't we lucky to have such a nice, long shelf?" A little perspective never hurts, and coming so close to losing our room means that we appreciate it tenfold. 

A few days ago, Aaron had an extra nurse who was being trained on bone marrow. There's a certain leveling up that happens in this unit: first, there are just regular nursing duties; then you get trained on chemotherapy, then easy bone marrow patients, and finally hard bone marrow patients. Aaron is considered an "easy" bone marrow patient because he is doing so well and has relatively few complications. More than one nurse has said that it is very typical to see bone marrow kids on a pain pump between Days +3 and +10, but aside from a little bit of bone pain (his doctor yesterday: "You know what that means--engraftment!"), Aaron hasn't had any pain at all. He's tried out pretty much every available anti-nausea medication but has been able to avoid the pain meds, so it feels like a victory. 

So that's the report for the week. Things are looking up, engraftment is on the horizon, and we are continuing to take one day at a time.

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