Rejoicing in Hope

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.

How to Make a Wish, Part 3

I had a lot to share about Aaron's Make-A-Wish experience, so I broke it down into several posts. Click here for Part 1 and here for Part 2.)

When you hear the term "shopping spree," you're probably picturing someone in a store frantically pulling things off of shelves and piling them into the cart as quickly as possible. Pre-Covid, this was fairly close to the way Make-A-Wish did it (although, since there was a predetermined budget, the crazed greediness was probably minimized slightly). 

As Aaron prepared for his wish, one of the coordinators actually called and said that Make-A-Wish had just barely reinstated this original kind of shopping spree. It came with some perks (a ride to the store in a limo, lunch out on the town, etc.), but I knew Aaron would much prefer to do his shopping online where he would not be overwhelmed by all of the choices right in front of him and would have plenty of time to tweak his list.

At the beginning of August, he was given the go-ahead to start creating his list. They emailed all of the guidelines ahead of time (how much he could spend, the types of items that were not approved, etc.). Although he was allowed to shop at most stores, they requested that if it was available on Amazon that he select it from there since it was tax free for them. 

This was the fun part. Aaron already knew many of the things he wanted since he'd been thinking about them for months. The very first item that was added to the list was the Lego Millennium Falcon. 

To keep things organized, Mike made a spreadsheet, organized by category with a running total of the cost. The categories were Clothes, Computer/Printing, Fun, Gaming Center, Lego, and Snack Bar. Mike and Aaron stayed up late adding and subtracting things until they got it just right. I mostly stayed out of this process since my suggestions were not appealing to a 13-year-old boy. 

In addition to Aaron's money, each of the other boys were also given $50 to spend on an item of their choice. This was really fun and exciting for them and made them feel a part of the experience. Clark chose a Playmobil pony set while the others all went with Lego (big surprise). 

When Aaron was satisfied with his list, I forwarded it to coordinator at Make-A-Wish who purchased the items and had them shipped to the home of one of the wish granters. One of the problems with Amazon is that prices can fluctuate depending on the day, so Aaron had a few smaller items that were easy to add or remove depending on the final cost when everything was purchased.

Since our wish granter, Megan, wasn't the one to actually buy the items but would be receiving them, I emailed a copy of the spreadsheet to her so she would have a heads up of everything that was coming. She said it was the most organized, streamlined shopping spree she'd ever done.

Aaron's wish presentation was scheduled for the very last day of August so that there would be enough time for everything to arrive. It wasn't only Aaron who was excited. The other boys eagerly counted down the days, informing me every day, "It's only [17 . . .11 . . . 3] days until Aaron's wish!" 

The plan was to go to Scheels at 8:00am before the store opened. All of Aaron's items had been delivered ahead of time, and Scheels' employees had wrapped them up. (The thought of all of those Amazon packages being gift-wrapped in Scheel's amused me just a little.) Scheels is a large sporting goods and outdoor recreation store. With fun attractions like wildlife exhibits and a giant Ferris wheel in the middle of the store, it's an experience, not just a place.

We invited extended family members to come for the wish presentation, but because it was at a rather inconvenient time (8:00 on a Tuesday morning), only my parents, one of my brothers, Mike's mom, and one of Mike's sisters could come. It ended up being a small, intimate group, and I actually think it was perfect. As much fun as it would have been to have more people there, it definitely would have been chaotic and stressful. This felt like the focus was truly all on Aaron, and he loved every minute of it.

When we arrived at the store, a couple of employees came out to the parking lot to greet us. Megan and Maddie were also there, as well as another representative from Make-A-Wish. When our whole group was assembled, we entered the store with Aaron leading the way. 

Balloons lined the entryway, and Scheels' employees stood on the sides cheering for Aaron. This kind of attention is not his favorite, so he made his way through the people as quickly as possible to the pile of presents they had set up near the Ferris wheel and aquarium. (At one point, I assured the Scheels' coordinator that even though Aaron's reactions were subdued, it was not for lack of excitement or pleasure. Clark, on the other hand, was doing his best to make up for Aaron's reserve.)

They had Aaron open his presents first. Even though he already knew what they were, it was still thrilling to unwrap them and hold the tangible objects in his hands. Scheels had even thrown in a few surprises: a Jazz hat (which Aaron immediately traded out for the one he'd been wearing), a signed photo of Zach Wilson, and a Wilson BYU shirt. The other boys opened their gifts, too. With all of the items grouped together, it looked like quite the mountain of (super fun) stuff.

Then the Scheels' coordinator told Aaron, "For the next hour and fifteen minutes, the store is yours! You can ride the Ferris wheel, play the arcade games, or go to the shooting range and bowling alley. We have breakfast set up for you in the cafe whenever you're ready." They really gave him the VIP treatment.

We started with the Ferris wheel. It had been a very long time since we'd done anything like an amusement park ride. As we went around and around, we felt the magic of the moment. I told the boys, "I bet none of your friends are riding a Ferris wheel before school this morning!"

We split up after that--the boys trying out the various other activities while the adults stood around and chatted. We didn't rush; it felt like we had just the right amount of time to get our fill of everything before the store opened for the day. 

We ended with cinnamon rolls, key lime cookies, and juice in the cafe. Mike's sister and my brother carried out all of Aaron's presents and loaded them into her van while we finished doing things inside. Somehow we ended up agreeing to take all of the balloons home with us, which made for an exciting ride.

The boys had eagerly anticipated this event for months, and it actually lived up to the hype for them. They loved every part of it. I thought it might be a let down to drop them off at school on the way home, but they were still riding high from all of it and didn't seem to mind. 

Meanwhile, Aaron cracked into one of his Lego sets right away (but not the Millennium Falcon--he saved that one for last). Later that night, we ordered take-out, courtesy of Make-A-Wish, to wrap up a truly awesome day.

You might be wondering what a 13-year-old boy decides to get with a significant amount of money. Here's a complete list, for those who are curious: BYU t-shirt, Jazz t-shirt, Jazz socks, Jazz jersey, gaming computer (to use with virtual reality), computer monitor, 3-D printer, 3 rolls of 3-D printer material, hover kart (to use with a hoverboard he already owned), dart board, darts, sound system, two gaming chairs (which one of the Scheels' employees liked so much that she decided to purchase a couple of the same for her family), Nintendo gift cards to purchase games for the Switch, one pro-controller for the Switch, Lego Millennium Falcon, Lego Star Destroyer, Lego Bugatti, small buffet (to use as a snack bar), microwave, drink fridge, three candy dispensers, M&M's and nuts. 

It's difficult to describe what this experience meant to Aaron. On the surface, it looked like a a young teenager just getting to buy things he'd never have the chance to under normal circumstances. But it was actually so much more than that. It was the months of planning and decisions and anticipation that distracted him from his current reality, which often seemed hard and dismal. It was having something to look forward to--first, New Zealand and then, the shopping spree. It was having something to talk about that was not transfusions or transplants or blood counts. It was interacting with people who were kind and enthusiastic and wanted the best for Aaron. 

It was making a wish and having it come true.

How to Make a Wish, Part 2

(I had a lot to share about Aaron's Make-a-Wish experience, so I broke it down into several posts. Click here for Part 1.)

At first, Aaron had very little interest in talking, or even thinking, about a different wish (I mean, can you blame him?). I talked to several people at Make-A-Wish to see if his wish could simply be put on hold. I told them Aaron was fine with waiting until it was safe to travel again. Although everyone was very sympathetic, they wouldn't (couldn't) compromise. 

For one thing, Make-A-Wish is a nonprofit organization. For tax reasons, they have to fulfill a certain number of wishes every month. They couldn't have a backlog of kids waiting for wishes. They had to keep the cycle going.

For another, they had a rule that a wish could not sit around waiting for more than a year after the process started. Although many wish kids have chronic conditions, others have illnesses that, although critical, can eventually be cured. Aaron fell into the second category. If too much time passes, then these kids have the potential of going back to their normal, healthy selves and no longer qualify for a wish. They said that Aaron was at risk of this happening if he waited too long to declare his wish. (As it turned out, Aaron was about to extend his time by needing a second transplant, but we didn't know that then. And it wouldn't have changed anything in terms of being able to keep his travel wish anyway.)

So Mike and I sat down with Aaron and brainstormed some new ideas. And we came up with three good ones:

• It is a well-known fact that Aaron loves Lego, so he thought it would be fun to turn the toy room into a Lego builder's paradise: large workspace, cool decorations, easy organization, lights, and, of course, more Lego. (Think LegoMasters, but on a smaller scale.)
• The family room was another area of the house he thought could use a revamp. He had the idea of creating the ultimate gaming room: video game console, sound system, new TV, entertainment center, comfortable seating. etc.
• His third idea was to turn the balcony into a fun hangout space. We basically hadn't touched it since we moved into our house. He thought it would be fun to add stairs so it would be accessible from the outside, add furniture and a snack bar, put up lighting, and hang a TV for outdoor movies. 

Megan and Maddie came over to our house to see all of the potential spaces and talk through various options. Each idea came with complications: there were things Make-A-Wish could do but other things they couldn't. For example, they weren't allowed to do any type of construction. They also would need a lot of guidance and vision to bring about any of the options, and making decisions is one thing Aaron does not like.

As we talked, the "magic" started to fade. Just like any organization, Make-A-Wish is governed by rules and protocols. So even though they want their wish kids to dream big, there is only so much they can do. 

When Aaron wished to go to New Zealand, the magic was there. They said "YES!" and took the entire planning process from there. It was out of our hands. They would work out tickets, accommodations, activities. All we had to do was show up.

I expected it to be the same with other types of wishes, and probably that is the case if you want to meet someone famous or there's a single large item you want (like a pop-up camper). But a room makeover requires a lot of logistics, and as we went through them, each idea was met with, "Well, we could do this part of it, but not that . . . " It felt like real life.

Before they left, the wish granters tentatively suggested that Aaron might want to wish for a shopping spree instead. Most of his ideas included a bunch of items: large desk or table for the Lego room, sound system for the game room, furniture for the balcony. Why not just get the things he wanted and create one of the rooms himself?

I was initially opposed to a shopping spree. It just seemed so materialistic: I wish for a bunch of money to go out and buy whatever I want. It didn't feel creative or special. It was just going to be a pile of stuff . . . Christmas on steroids.

But as we talked to Aaron about the various options, he came to the conclusion that this was, in fact, the best choice. The other wishes couldn't be completely fulfilled; a shopping spree could. Plus, as Aaron started talking about some of the things he had always wanted but would always be too expensive (the Lego Millennium Falcon came immediately to mind), I could see that the thought of getting to buy whatever he wanted actually was magical for a 13-year-old. As Mike was quick to point out, "As everyone knows, if a genie has to grant you a wish, you always wish for more wishes." That's essentially what the shopping spree felt like.

Aaron called Megan and told her he was officially changing his wish to a shopping spree. He was genuinely very happy about it.

It was around this same time that the sporting goods store, Scheels, first became involved. Many companies reach out to Make-A-Wish to sponsor a wish kid or host an event or participate in a wish in some way. When Scheels did that, Make-A-Wish paired Aaron with them.

At first, Scheels was going to throw the proclamation event for Aaron. This is where the wish kid finds out that his wish has been approved and is officially on the docket to be granted. These proclamation events are typically fun parties with lots of family and friends attending.

Aaron's proclamation party was scheduled for mid-November 2020. However, the date happened to fall right when the governor issued a stay-at-home order to try to curb the pandemic. All non-essential get-togethers, parties, and events had to be cancelled. So Aaron's proclamation party was postponed until further notice.

The holidays were fast approaching, which is, understandably, a very busy time of year for a big retailer like Scheels. So the event was put on hold until after the new year.

And you know what happened at the beginning of 2021:

Aaron's bone marrow crashed, he was back in the hospital on a regular basis, and he needed lots of transfusions. The wish was the furthest thing from our minds as we went back into full-on survival mode. (Interestingly, he relapsed during the very time period when we were originally supposed to be in New Zealand, leading me to think that maybe the cancelled wish was a tender mercy after all.)

Knowing that a party at Scheels was going to be impossible, Megan and Maddie took the proclamation into their own hands. One evening, they showed up in aprons and chef's hats with a huge pizza from The Pie and a smaller "pizza" made of money. This was accompanied by a note that said he would soon be receiving some "dough" for a shopping spree. They did such a good job of keeping the excitement alive, even as the months dragged on.

Because of Aaron's need for a second transplant, Aaron's wish got pushed back to May, then June, then July. Scheel's still wanted to be involved, but they switched to planning the wish presentation instead of the proclamation. We just had to make sure that Aaron was healthy and stable enough to be able to go.

I was so grateful that Scheel's was willing to wait for Aaron. I knew from the start that Scheel's would be a great pairing for Aaron, and I didn't want him to miss out on the opportunity. At the same time, we couldn't rush into it. Aaron's health had to come first. (Luckily, everyone at Make-A-Wish is very cognizant of the vulnerability of the kids they're dealing with, so they were very patient with the process, and fortunately for us, so was Scheel's.)

As I was in communication with Aaron's wish granters and other people at Make-A-Wish to pin down a date for the fulfillment of his wish, Megan realized that the month we were planning for (July) was the same month as Aaron's thirteenth birthday. It turned out that thirteen was a big deal because it would bump Aaron up into a higher bracket in terms of the shopping spree budget. If the wish was fulfilled in July, he would be in the lower bracket (his birthday was at the end of the month); if he waited until August, he would be in the higher bracket. We had no idea that there were different allotments depending on the age of the child. With just a few weeks separating one amount from the other, everyone at Make-A-Wish highly encouraged him to wait.

So it was set for August, and Aaron was eagerly anticipating it through the whole summer. 

But then, he was thrown one more curveball: Make-A-Wish called and offered him back his travel wish.

With Covid-19 somewhat more stable (at least at that time), they had opened up travel wishes within the United States. Aaron still couldn't go to New Zealand, but he could go anywhere in the US. 

Even though it wasn't his original wish, it was very tempting. He loves traveling and has missed it so much during these months being cooped up at home. Even with boundaries on where he could go, the possibilities still felt endless--Hawaii, Alaska, Florida, New York--and each place offered an array of attractions, depending on what he was in the mood for.

He agonized over this decision for several weeks. And when I say "agonized," I really do mean agonized. I couldn't even bring it up without him crying or shutting down. We made a list of pros and cons with both wishes, but neither produced a clear answer. He was sure that whichever wish he picked, he would regret not choosing the other one. The wish process had already been full of so many decisions, and as nice as it was to have this as an option again, I think it would have been better for Aaron if he hadn't known about it. 

In the end, it was time that made the decision for him. He had already been waiting nearly two years for his wish. The shopping spree wish was literally going to be fulfilled the very next month. The travel wish, on the other hand, wasn't going to happen until next spring or summer. Things have been so up and down in the world and Aaron's own health that we could see the wish being pushed back again or switched back to a shopping spree wish. I think he was just feeling a bit tired of plans changing on him, and I couldn't blame him. I texted Megan and told her he had decided to stick with his shopping spree wish.

As so often happens after a decision has been made, Aaron felt extreme relief and happiness just to be moving forward again. He was fully on board with and excited for the shopping spree. Contrary to what he was worried about, he actually didn't have wish remorse about letting go of the trip. 

He was ready to start making the ultimate, most epic shopping list of his life . . .

How to Make a Wish, Part 1

I sat down to write a post about Aaron's experience with Make-A-Wish and quickly realized that if I wanted to tell the whole story, it would turn into a massive post. So rather than edit my long-windedness, I decided to just break it down into three parts. 

Shortly after Aaron was diagnosed with bone marrow failure in August 2019, his fifth grade teacher called me and asked if I'd be okay if she referred him to the Make-A-Wish program. She felt like dreaming, planning, and anticipating a wish could help Aaron cope with the long months of treatment and recovery.

So she filled out all of the necessary paperwork, and in October 2019, just a couple of weeks after Aaron was released from the hospital following his first transplant, he met his wish granters, Megan and Maddie, for the first time.

This was pre-Covid, so our family was able to go to the Make-a-Wish building to brainstorm ideas and get to know his wish granters. Aaron was severely immunocompromised at the time, so it was just our immediate family and the wish granters. The building was quiet and empty, and it felt really special.

Aaron had been thinking about his wish in the weeks leading up to this meeting, but the only thing he had settled on for sure was that he wanted a trip. His top choice was New Zealand, but I gently tried to discourage him from that since it was so far away and would require many hours of travel (and a lot of jet lag) that would take away from the actual fun of the trip.

Megan and Maddie asked Aaron a lot of questions about his interests, and we all had a chance to write down our own wishes for Aaron's future. When they asked for his top wish, he said the Caribbean. They wrote it down, put it in a little capsule, and then Aaron unlocked the door to the wishing room. The inside of the room felt magical, especially as Aaron placed his wish inside the chamber.

After that night, Aaron started doing a lot of research about the islands in the Caribbean. He checked out travel DVDs and books. He looked into going on a cruise versus spending the whole time on one island. 

And the more he researched, the less enthusiastic or excited he seemed to be. I realized it was because he didn't actually want to go to the Caribbean; he wanted to go to New Zealand. I sat down with him and said that this was his wish and that if that was New Zealand, then he shouldn't switch to something else. The travel and jet lag wouldn't matter. He would still get several days in a country on the other side of the world--a country that most people only ever dreamed of going to. It would be worth any hassle or discomfort it took to get there.

So he switched his wish to New Zealand. And the spark returned. Since we would be traveling outside of the country with seven people, Make-a-Wish asked Aaron to write a letter explaining why he wanted this trip. One part of his letter said, 

"Before I got sick, I was on the swim team. I would love to go snorkeling and see all of the marine life in New Zealand. My brothers and I love to play outside and go exploring, and I think that there would be a lot of cool hikes, beaches, forests, and caves in New Zealand." 

A couple of weeks later, we received the news that Aaron's wish had been approved by the board. They planned to host an official proclamation to tell Aaron his wish was being granted. The trip itself wouldn't be able to happen until January or February of 2021, but they wanted us to get passports for all of the family as soon as possible so that everything would be all set on our end. 

So on a Friday afternoon in February 2020, we all trooped over to the passport office for photos and applications. Mike was super prepared and had filled out everything ahead of time so we could streamline the process . . . but then they told us he'd used the wrong color of ink. It was getting close to the end of the day, so we scrambled to fill out all of the paperwork again. 

Then they told us that it was their policy not to take passport photos of children under five years old, and we'd have to go somewhere else for Ian's photo. We begged them to make an exception and then prayed that he'd hold still (he did). We left the office feeling immensely satisfied at having checked off one of the most essential things for international travel. 

We thought the hardest part was going to be waiting for the months to pass until Aaron was healthy enough to travel and it was his turn in the Make-a-Wish queue. But the very next month, the world came to a grinding halt with the fast spread of Covid-19. 

We assumed Aaron would still get to travel to New Zealand even though it might be delayed due to the virus. However, in July 2020, I received a call from the Make-a-Wish director: all wish travel was officially cancelled; Aaron would have to choose a different wish. 

(To be continued . . . )

Patience in the Process

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

An End and a Beginning

I have two noteworthy items to share this week:

The first is that Aaron had his central line removed on Friday! This is a big milestone. It means that he is no longer dependent on transfusions, IV medications, or anything else that needs to go through a line.

We remember the days when he was getting 2-3 platelet transfusions every week. We remember when he required two "brains" with four pumps each on his IV pole while he was in the hospital, just to handle all of the medication he needed. We remember the six weeks at home when he was getting foscarnate, magnesium, and micafungin through his central line--totaling 8-10 hours of infusions every day. We remember flushing it every morning and night since it was placed in March. 

Saying goodbye to this line is a giant step in the right direction. One by one, Aaron is cutting the strings that have kept him tethered for so long. At this point, he takes several oral medications twice a day, goes into the clinic once a week, stays away from large groups of people, and that's pretty much it. 

While he was unconscious getting his line removed, they also performed a bone marrow biopsy to check on his chimerism and cellularity. We'll have those results in the next week or so. I know there's nothing I can do to influence them one way or the other, but I still spend my time worrying. I can't help it. 

In the meantime, school is helping to distract all of us, although it comes with its own set of worries.

On Monday, Mike and I met with the school counselor and assistant principal to discuss Aaron's situation.

As much as we wanted Aaron to be able to go to school, we had decided that it would not be a good idea for at least the first quarter. However, our school district only offered one virtual option. If you chose not to attend in-person, you would be put in an online school with all of the other online students from various schools across the district. 

I did not feel good about this option. For one, it seemed like it would make for a difficult transition when the time came for Aaron to return to school (which we hope is sooner rather than later). For another, Aaron is currently enrolled in all GT classes at his school, but the online school did not offer any accelerated options. 

When I asked the counselor and assistant principal if we could keep Aaron enrolled and just have him access, complete, and turn in all of his assignments online, they said that such an arrangement would not be possible. The district was really trying to motivate people to attend school since students are more successful when they're in the classroom with their peers (don't I know it!). If schools were given too much flexibility, then there would be too many students opting out of in-person learning.

While I understood the reasoning behind this decision, I felt like Aaron was a unique case (. . . "but my child is special!!!"), not only because he had a serious medical condition that had nothing to do with Covid, but also because we were hoping his absence would be temporary. The tears were threatening to spill as I pled for a creative solution.

They were sympathetic to our situation (and so nice!), but they felt like their hands were tied. But then they decided to call in one of the other counselors to discuss the possibility of home hospital. This counselor was a miracle worker. She was seasoned and experienced and determined to find a good solution for Aaron. She changed the tone in the room, invigorated the other two, and opened our minds to other possibilities. We started brainstorming and making a list of options. By the end of the meeting, we had delegated assignments to each person. The counselor promised to touch base soon. I left feeling hopeful, even though we hadn't come to any specific resolutions.

A couple of days later, she called and told me that our original plan was going to work: keep Aaron enrolled in school with a medical absence for the quarter; work with each of his teachers individually to get his assignments each week; complete his work online. She had reached out to each of Aaron's teachers, and they were all onboard with the idea. I was overwhelmed with gratitude for a school that genuinely cares about not only the collective classroom but the individual student. 

We still have no idea how well our plan will work, but we're about to find out. School starts tomorrow!

100 Days and 13 Years

Aaron hit two big milestones this past week: He turned 13 years old, making him an official teenager. And he made it to Day +100.

100 days post-transplant is significant for a bunch of reasons: the threat for GVHD goes down; blood counts generally stabilize; certain medications are reduced or even eliminated; the central line is removed; another bone marrow biopsy is performed to check the cellularity and chimerism; restrictions from the low-microbial diet are lessened; and, in some cases, the weaning process of the immunosuppressant (in this case, tacrolimus) begins.

There's an emotional reward that comes with 100 days as well. We've come so far, and it feels like maybe, hopefully, we're through the worst part of the storm. We can just begin to make out the line of the horizon after a long night. We are pointing our boat towards the future.

With Aaron's first transplant, the bone marrow team chose to wait until he was six months post-transplant before beginning to wean him off of tacro. This is the normal procedure for patients with bone marrow failure (in contrast with leukemia patients, who usually begin the weaning process at Day +100). 

At this point, it is that immunosuppressant that is keeping Aaron tied to home more than anything else. Even though he feels well and his counts look relatively good, his lack of immune system puts him in a very vulnerable state. 

As just an example of what the immunosuppressant does, let's take a look at the Covid-19 vaccine. With cases surging right now, I would love for Aaron to be able to have the protection offered by the vaccine. But even though he is old enough, the immunosuppressant would make it completely ineffective. A vaccine works because it triggers an immune response and the body builds up antibodies, which can later be called on to fight the virus if it is encountered. But with Aaron, his immune system is asleep. So if he got the vaccine, there would be no immune response. His body would ignore it. 

Unfortunately, if his immune system won't pay attention to a vaccine, it also won't pay attention to a virus. Something could be wreaking havoc inside of him, and his immune system, particularly his T-cells, would just sleep right through it. This is exactly why the doctors were so proactive with treating CMV a couple of months ago. His immune system wasn't paying any attention to it, so it could have stealthily wiped out his transplant. 

Anyway, all this to say that we were staring down another three months on this drug while Aaron sat around at home, twirling his thumbs, waiting for something to happen.

But then on Friday, Dr. R. burst into the exam room with, in Mike's words, "guns a-blazing." I'm not sure that's exactly the right idiom, but basically what he meant was that the doctor came in with a plan of action, which he intended to implement immediately, to get things moving for Aaron.

At the heart of this plan was to begin tapering the tacro. 

And just like that, three months of waiting vanished. How can I describe to you the feeling of thinking you're going to be waiting until the end of October but then having it suddenly jump forward to that very day? It was a gift: "Here, you can resume your life three months sooner than originally planned." 

To be honest, Mike and I had wondered if tapering the tacro early was a possibility, since we knew that it was done with cancer patients. We had discussed it several times between ourselves but ultimately decided not to bring it up with the doctor because it didn't seem likely to get a good response. 

But then that's exactly the plan he came up with.

As I mentioned last week, we've been thinking about the school situation a lot, trying to determine if there's a safe way for Aaron to go at least part of the time. I think this got the team thinking about Aaron's particular situation and if it was wise to wait until six months post-transplant to begin the taper. 

And what they ultimately decided was it would be beneficial to get Aaron off of tacro as soon as it was safely possible. In Dr. R's words, "This is not a compromise. It is what I'm advising you to do." I think he wanted to make sure we knew that he wouldn't consider jeopardizing Aaron's health just to get him back in school sooner. 

Instead, the reason why they decided to taper tacro three months early was the answer to this question: "What is the one thing we are most concerned about?" Graft failure. This is what happened in January, and we are doing everything we can to ensure it doesn't happen again. 

In a couple of weeks, Aaron will have another bone marrow biopsy. This will give us key information about the health of his bone marrow. Particularly, we will be able to see what his T-cells are up to. What percentage of them are Aaron's vs. Maxwell's? When they drew a blood chimerism in June, it looked like the T-cells were 100% Maxwell's, but the biopsy will give us a more accurate picture, particularly if anything is starting to go wrong and Aaron's cells are making a comeback. If this is the case, then we actually want the immune system to be back up and running to knock Aaron's cells back down.

And if that's not the case and things still look good on the bone marrow front, then we still want to restore his immune system so he can protect himself from illnesses this fall and winter. Either way, it's a win-win.

Maybe.

There is, unfortunately, always the threat of GVHD, and the risk of this actually goes up as the immunosuppressant goes down. GVHD can be mild and treatable, but sometimes in can cause chronic complications that are very debilitating. The good news is that Aaron's individual risk is relatively low because: he didn't experience any GVHD the first time, this is his second transplant, and we used the same donor. 

Even though it looks like we're shaving three months off of Aaron's sentence, there are still a lot of things that could happen to slow it back down. So we're trying really hard not get ahead of ourselves or celebrate too early. 

But we have to celebrate a little, right? He is at Day +100, after all. 

A List of Good Things

It has been three weeks since I've written anything about Aaron.

And in this case, no news was good news because these have been the best three weeks we've had since January. 

Here are some good things that have happened:

*Aaron has been fighting cytomegalovirus (CMV) since the beginning of June. Even though he didn't have any actual symptoms, his doctors immediately started him on an anti-viral medication that had to be given through his central line three times a day. To Mike and me, this virus seemed fairly innocent and like it didn't deserve so much fuss and attention. For most of the population, this might be true, but for someone with brand new bone marrow, it can be quite dangerous. I have to admit that I grumbled about all of the infusions until one of the veteran nurse practitioners said, "I can remember when we lost transplant patients to CMV. We didn't detect it soon enough, and it overwhelmed their bone marrow." I stopped complaining after that, but it was still a day of much rejoicing when Aaron's CMV level finally came back as "undetected." That meant we could go down to only one infusion a day, which felt like practically nothing compared to what we were doing. (And I have to give a big shoutout to Mike who handled about 80% of all of the infusions.) 

*Aaron's counts are looking relatively good, especially for this stage of transplant. As of Thursday, his WBC was 3300 (neutrophils were 2100); hemoglobin was 11.0; and platelets were 137. These numbers are all still considered low, but hemoglobin and platelets are edging very close to normal. It is not unusual for the white blood count to be low right now since he is still on an immunosuppressive drug (and actually, even though it is low, it is still higher than we saw his WBC after he came off of the immunosuppressant last time, so that's good news.) 

*The BMT team took Aaron off of micafungin, which meant we eliminated another nightly infusion. This means that Aaron is down to just one infusion of foscarnate (the anti-viral) every morning and one infusion of magnesium every night, plus his daily pills. It no longer feels like we're tethered to home by a short medical tube. Hopefully our circumference will continue to expand as we distance ourselves from transplant. (Aaron is at Day +93 today.)

*Our kids spent a few days with Mike's parents at their cabin in Logan Canyon. Although we couldn't leave Aaron for the duration of the stay, he got to spend the day there when we took up the other boys on Sunday and again when we picked them up on Wednesday. This felt like a true treat to him (and to all of us, to be honest). 

*Aaron's doctor never had to follow through with his threat to put Aaron on a feeding tube. His appetite came back and so did the pounds he had lost. Unfortunately, this also means that his diabetes is back to where it was, but it's a tradeoff we're willing to take. 

*He has hair again! It still looks pretty thin and patchy, but give it another month, and he might even need a haircut!

*It has been over a week since he has needed to take Zofran for nausea. 

*Maybe the best way to tell that things have improved is just in the way Aaron is acting: he feels good and has the energy to match it. He's up for anything, including a bunch of things he's not allowed to do yet.

With a good list like that, you might wonder if there's been anything to dampen the mood lately. 

And unfortunately, there is.

It can be summed up in a little six-letter word: SCHOOL.

I had been waiting to bring up the subject of school with Aaron's doctors but finally decided it was time since the first day is fast approaching. Mike took Aaron to his appointment on Thursday. I anticipated a lengthy conversation as they weighed the risks and benefits of social contact at school. I sent Mike with several suggestions for possible accommodations we could make in order to make school safer. 

But as it turned out, any preparation on our part was for nothing because Dr. R. shot down the idea of school as quickly as Mike brought it up. He said that even when Aaron reaches one year post-transplant (in April), his immune system will still only be equivalent to that of a newborn baby's, so it would be foolish to send him right now when his immune system is working even less than that. (And he said that this would be his opinion regardless of Covid's status.)

There are a number of reasons why I feel like this statement is an exaggeration, but I won't get into those right now, especially since I don't have any actual data to support myself. 

But basically, we're at an impasse. I feel strongly that Aaron needs to go to school in some capacity this year, but I also am extremely hesitant to disregard the doctor's advice. What I really wish is that Dr. R. hadn't gone with a "one answer fits all" approach. I feel like there's a great difference between a 13-year-old whose counts look good, is willing to wear an N95, and could literally come home during high-exposure times of the day (like lunch) compared with, say, a five-year-old with unstable counts who doesn't like to wear a mask and is around a bunch of kids who can't stay out of her face. How can we give both of these situations the same answer? 

This discussion isn't closed for me yet, but I have to arm myself with more information first. I need to set up a meeting with the vice principal at the school so we can come up with a 504 for Aaron and talk about our options. In the past, his junior high has been very easy to work with, and maybe they have some brilliant idea that I haven't thought of yet. Unfortunately, everything that was in place because of Covid last year, and that made transitioning from in-person to online so easy, is no longer in place, and that's going to make it much more difficult to find a virtual option that will work. 

All I know is that the doctors are only looking at this from a physical standpoint, and they see a boy with a very fragile immune system and brand new bone marrow. I see that same boy but with the added layer of his mental health and well-being which is absolutely craving social interactions, a challenging academic environment, and the personal satisfaction that comes from achievement. In many ways, it would be easier to keep him at home for another school year, safe in his no-contact bubble, but the cost of this would be great. I'm convinced there has to be some middle ground, a compromise that will be just right for him.

So stay tuned . . . 

Aaron on his first day of kindergarten, 2013