Rejoicing in Hope

Nov 14, 2021

I somehow got out of the habit of writing every week, and now it's been nearly two months since I shared an official Aaron update.

But I have news. And it's all good.

First up, school. When I last wrote about school, the plan was to have Aaron attend virtually for the first quarter. And this is pretty much what happened. 

Most of his teachers were extremely easy to work with. His French teacher went so far as to just revamp all of his assignments so they were more conducive to a home, rather than school, environment. Maxwell helped out by going around to each of the teachers every Friday and dropping off Aaron's assignments for the week and picking up new ones. (It seems Max continues to step up to the plate whenever we need him.) The teachers all got to know him, and Aaron's math teacher was especially nice, sometimes going out of his way to find Max and drop off a test with him mid-week. Aaron started "attending" jazz band rehearsal at 7:00 every morning via his friend who FaceTimed him from the classroom.

Even though Aaron despised doing all of his assignments virtually, and even though it required a lot of nagging from me to get him to stay on task instead of playing his ukulele all day, it really was the ideal situation considering the circumstances. 

Midway through the quarter, we decided he could attend jazz band in person since it happened before school and didn't involve very many kids. He sat at the back of the room and wore a performance mask that had a flap in it so he could still play his trombone. You might think that waking up at 6:30 just to go to jazz band and then coming back home wouldn't have been worth it to him. But he was not one bit annoyed about losing sleep. He acted like it was the biggest treat to get to run over to the school every morning, and it made the long, boring days somewhat more bearable. 

Sometime during the first quarter, Aaron and I were at a doctor's appointment, and Dr. R. said, "So Aaron, are you back in school?" I looked at him in disbelief. Was he actually asking if Aaron was in school after he had basically forbidden him from going? I could tell Aaron was thinking the same thing. But I didn't make any indignant exclamations. I simply said that Aaron was doing school from home until he was completely off of the immunosuppressive. Dr. R. said he thought that was an excellent plan, and I felt really good about moving forward with a second quarter start date.

Aaron's health continued to improve during the intervening weeks. On October 7th, he took his final dose of tacro. On October 25th, he got his first dose of the Covid vaccine (we might have been jumping the gun a little on that, but we figured even minimal protection was better than none). And on October 26th, he walked through the junior high doors as a regular student again. 

For all of my wanting him to be back in school, I did get just a little sentimental the week before when he was practicing his ukulele (the only thing he ever really wanted to do), and Ian was stretched out on the couch next to him. I suddenly wondered if I hadn't actually appreciated the unique gifts that came with having a 13-year-old home with me all day. Aaron and Ian loved being together. Ian would often be the one to encourage Aaron to do his school work: "Have you done French yet, Aaron?" (For some reason, he loved watching Aaron work on his French assignments.) Sometimes Aaron would come into the kitchen when Ian and I were baking and sing to whatever music we had playing. And I definitely took advantage of having a live-in babysitter if I needed to run a quick errand in the middle of the day. Isn't that the way it is with so many things in life? You find all of the things you don't like about them until they're almost gone, and then you suddenly realize there were some hidden blessings you hadn't even paid attention to.

Aaron didn't seem at all nervous about going back to school. There were a couple of things I hadn't been able to get any answers on before school started, but he just said, "It's fine. I'll figure it out." And he did.

It honestly has been as seamless of a transition as I could have hoped for. Because Aaron had been working with all of his teachers virtually, they all knew who he was when he showed up in the flesh for second quarter. He was completely caught up with assignments and knew exactly where the class was in each subject. This was exactly why I pushed so hard for an exception to the school's rule back in August. If the administration had forced Aaron to be in the district's online school, rather than his actual junior high, that first week back would have been so much more intimidating and taken much longer to adjust to.

There are two alterations to Aaron's school schedule that make it slightly different from the norm: he comes home for lunch, and he doesn't have a seventh period. Lunch is the only time when Aaron is unable to wear his mask, so to minimize germ exposure, we decided to just have him come home during that time. I am so grateful for our close proximity to the school that makes this possible. And I love seeing him in the middle of the day and getting to have a quick chat with him. I wish Max would come home for lunch, too. As for the seventh period, that didn't have anything to do with needing Aaron to have a shorter school day. It was simply that we couldn't find a class that fit into that period, and I figured it couldn't hurt to have him come home earlier than everyone else. He'll have a full schedule next semester. 

So school is good. The other piece of news has to do with diabetes.

Starting in September, Mike and I noticed something remarkable happening with Aaron's glucose. At that point, he was getting a long-acting dose of insulin every night (usually about 11 units), but he rarely needed fast-acting insulin before a meal. Without insulin during the day, it typically took him about three hours after eating to return to a normal glucose level. This was sometimes just in time for the next meal where he'd start the process over again. Still though, we were so grateful that he was fairly stable and didn't require any carb counting or frequent dosing. 

Because he was wearing a CGM (continuous glucose monitor), we could keep a careful eye on his glucose and react quickly if needed. However, as the weeks went on in September, I noticed that he was returning to a normal level more quickly than he had been.

As Mike prepared to give Aaron his slow-acting insulin one night in late-September, we noticed that his glucose was right around 100. We didn't feel good about giving him insulin when he was already right where he should be. So we did something reckless and skipped his dose. (This actually wasn't as reckless as it might sound--we had talked to his endocrinologist about something similar when Aaron had been sick a few months before and they said it was fine to skip if his levels were good. Plus, we knew we could watch his monitor and correct for a spike if needed. And honestly, a spike is far better than a crash, so it seemed like the safer option of the two.)

I wish I had written down the date that we decided to skip that dose. It turned out to be significant because Aaron has not had a drop of insulin since then.

Day after day, we watched in amazement as his numbers got better and better. I would hold my breath as he chugged down a 12 oz. bottle of root beer or ate candy through a movie, gearing up to reach for the insulin pen. But instead, his body responded like it was supposed to: a small spike and then a drop back down to normal. 

There seemed to be a direct correlation between the weekly taper of the immunosuppressive and more normalcy with his glucose. Every week, we'd bump down his dosage, and his glucose would follow suit.

Mike and I both worried about getting our hopes up. We'd have whispered conversations as we both checked in with Aaron's monitor: "Did you see what that cookie did to his glucose? Nothing." At first, we didn't even mention it to anyone else because it seemed too good to be true. But as week after week went by, and Aaron still wasn't getting any insulin, we began to think that maybe, just maybe, we could say goodbye to diabetes.

Aaron finally had an appointment with the endocrinologist at the beginning of this month, and his A1C  confirmed what we were seeing. (The A1C is a blood test that can look at your average glucose level over the last three months.) Aaron's A1C was 5.0%, which placed him squarely in the non-diabetic range. The doctor said he could stop wearing his CGM, and we could just do a fasting glucose and post-meal glucose once a week. They said to call if anything changed.

So what does this all mean? Because remember, Aaron was diagnosed with Type-1 (not Type-2), which is a condition that does not go away with time. Once you have Type-1, you are supposedly stuck with it.

Here's my non-professional take on it:

The reason why Aaron was diagnosed with Type-1 was because when he was in the hospital for his transplant, his blood glucose level went out of control (300+). He was on TPN at the time, and they figured it had messed him up, so they took him off of that. He was still high. Then they started looking at the medications he was on. The big trigger for medication-induced hyperglycemia is steroids, which Aaron was not on at the time. However, he was on two other medications that were known to sometimes cause hyperglycemia: mycophenolate and tacrolimus. 

I read about the side effects of these drugs right after Aaron was diagnosed with Type 1, but none of the doctors (bone marrow or diabetes) seemed interested in them. In fact, a few weeks after Aaron's Type-1 diagnosis, Dr. R. said, "Did you know tacrolimus can cause hyperglycemia?" And we were like, "Um, yeah, didn't you?"

Anyway, the reason why they didn't blame the medication was because they did two blood tests at the same time all of this was going on: the A1C (which came back at 7.6% but couldn't be completely trusted because Aaron was getting frequent blood transfusions at the time) and another one to check for Type-1 antibodies. 

The antibodies test showed that Aaron had two of the four antibodies for Type 1. Because he needed insulin to manage his glucose and he wasn't on steroids and he had the antibodies and he had experienced a major stress that would explain the sudden onset, they diagnosed him with Type 1. 

But with the way things have gone, it seems more likely that it was the tacro causing the diabetes all along. 

Regardless, the fact remains that Aaron has two antibodies for Type-1 diabetes (at least we think so--they actually haven't repeated the test to confirm that they're still there). This puts him at risk of developing Type 1 in the future, but it is not a guarantee. There are many people who have the antibodies but not an active case of diabetes. It's more of the "watch-and-wait" advice we've been getting for so long.

So that's where Aaron is right now. I am of course finding little things to worry about (like the dark circles that seem to always want to hang out below his eyes), but for the most part, things are very stable and, dare I say it, normal. We are starting to look forward to 2022 and hoping there might even be a few vacations to fun places mixed in with the normal, everyday activities. 

If I'm being honest, the hardest thing for me right now is actually that everything does feel so normal. I feel scared to enjoy it too much in case it all gets taken away. Romans 12:12 says that we should "rejoice in hope," and that is what we are trying to do. Being back in school and released from the restrictions of diabetes has given us hope that we are finally on the other side. We are rejoicing in these good things and  exercising hope for more in the future.


  1. Wow, that's all so exciting! And how wonderful that the diabetes went away too.

  2. No more diabetes?! That’s awesome!

  3. This is great news! And I'm glad he's made it to junior high.

  4. I feel the need to give a shout out to Max. An example of selflessness we can all learn from

  5. We are rejoicing in hope for you all! Congrats to Aaron for his accomplishments! So exciting to return to school and diabetes free!!!


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