How to Make a Wish, Part 2

Sep 25, 2021

(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

Sep 19, 2021

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 . . . )

A Little of This and That in August

Sep 12, 2021

August is not my favorite month of summer--usually because it feels like we get prematurely cut off by school (which was certainly the case this year). But there was plenty to do, and we spent our time in a variety of ways, namely . . . 

Participating . . . in a non-traditional water balloon fight. One of Mike's sisters dropped off 100 water balloons to celebrate Aaron reaching Day +100. The boys launched them at each other from the balcony down to the tramp. It made the balloons last longer and was more fun than just running around the yard. 

Learning . . . how to make cookies. One of Clark's summer goals was to learn how to bake cookies. As the summer drew to a close, I was feeling guilty that I hadn't yet helped him with this goal. And then I had the genius thought to let Max take charge of it, which turned out to be a much better plan. Max was so patient and kind and happily shared all of his years of baking wisdom and expertise. Clark felt proud and successful, and the results were delicious. 

Watching . . . shooting stars. On a clear night in the middle of the month, we drove away from the city lights so that we could have a clear view of the night sky. We went during one of the peak nights of the Perseid meteor shower, and we were not disappointed. All of us (except Ian) spotted multiple shooting stars. I saw a long and brilliant one streak across the horizon, and it was especially memorable. But even if we hadn't seen a single shooting star, the drive into the mountains would have still been worth it--the night sky was breathtaking. You forget how vast and magnificent it is when it is hidden by so many lights. It seemed like a truly perfect and magical evening . . . until the drive home. We got back onto the twisting mountain road, and after a few minutes, I heard some retching in the back. Ian, who is prone to motion sickness, had thrown up all over himself. Usually, he would have been aware of it enough to give us a warning, but it was so late that he was actually half asleep and didn't realize what was happening. That put a damper on things, but I was just grateful it had happened on the way home instead of the way there.

Saying . . . goodbye to his central line. Aaron's broviac was in heavy use from March to July, but he finally didn't need it anymore. The homecare nurse came over for one last dressing change the day before it was removed, which was probably unnecessary, but we wanted to say goodbye. I should have kept track of how many hours that line put in for Aaron. It would have been in the hundreds for sure, maybe even more. 

Holding . . . our breath due to intense smoke. One morning, we were outside doing yard work. It was a beautiful day, but a sudden wind came up, and as we looked out across the valley, we noticed smoke rolling in from California. Within forty-five minutes, it had reached us and entirely covered up our mountains. It was surreal and felt like some kind of apocalyptic event. The air quality was reported to be the worst in the world, and we didn't dare go outside. We continued to experience smoky air off and on throughout the rest of the month.

Soaking . . . up torrential rains. After months of severe drought, August delivered. Over the course of three days, our area received 2.8 inches. This amount of rain is unheard of around here. It just rained and rained--sometimes slowing to a drizzle, other times pouring buckets. Unfortunately, due to a clogged rain gutter, we did have some flooding at our rental house, but Mike was able to get everything suctioned and dried out. On the second day of rain, a lot of smoke came with it, which was the weirdest combination. We didn't get that nice, clean air scent, but instead felt stifled by the smell of smoke. But all in all, I think the rain did more good than harm, and you just can't beat the soothing sound of falling rain (one of my favorites!). 

Trying . . . out a few Olympic sports. While we were still heavily invested in the Olympics, Mike borrowed a shot put, javelin, and discus from a friend, and the boys tried throwing them. It was harder than it looked and definitely gave them an appreciation for the skills of trained athletes.

Losing . . . his first tooth. Just a few weeks ago, Clark said, "I wish I could have a loose tooth." I told him not to get his hopes up since most of our kids seem to have very slow tooth genes--slow to come in and slow to fall out. But then, not very long after that, he suddenly had one that was loose, and he couldn't have been more thrilled. He wiggled it obsessively, and within just a few hours, it was barely hanging on. Mike gave it a quick tug, and it was out. Clark told us that one of his friends has a tooth fairy named Fairy Ann Twinkle Toes, so he decided to write a note to ask the name of our tooth fairy. In our house, the tooth fairy plays a very minor roll. Money gets left under the boys' pillows (sometimes, if the tooth fairy remembers), but there isn't any show or fanfare whatsoever. But still, it seemed like his note deserved a response. The next morning, Clark found a dollar under his pillow along with a tooth shaped paper that said, "My name is Gurb." This name made me laugh so hard, I can't even tell you. I think it fits our forgetful, neglectful tooth fairy. 

Spending . . . a few days at the pool. Clark and Ian loved the pool more than the other boys this summer, so it was often just the three of us there. As the summer waned, so did the crowds, which was nice. Ian gained a lot of confidence in the water this year. He is quite a bit more timid than the other boys were at his age, so he always stayed close to the steps but he was usually without a floatie. 

Reclaiming . . . my knitting passion. Turns out all I had to do was go spend a couple hundred dollars at the yarn store, and it was back in full force. I don't have anything to show yet because my current projects are big and will take several weeks/months to finish, but I'm going strong again. 

Starting . . . school. The first day of school began early this year (August 16th), and none of us were ready for it, especially since we were trying to get things figured out with Aaron. Luckily, everything has worked out, and everyone has settled into the new routine (although Aaron (eighth grade) absolutely hates doing school virtually, so the sooner we can get him in-person, the better). Maxwell is in sixth grade and started junior high this year. He is not a fan of change, so it was a big leap for him, but I think he actually likes rotating through classes and teachers. Most of his closest friends are in his classes with him, so that helps, too. He has also become our little runner for Aaron and spends Friday afternoons dropping off all of Aaron's assignments to his teachers and picking up new ones for the coming week. Bradley (fourth grade) and Clark (second grade) had no reservations about going back to school; they love their teachers and especially like being back with their friends; I have been pleasantly surprised with the level of mask wearing at the elementary school. Both Bradley's and Clark's classes are about 95% masked. And then there's Ian . . . still waiting for preschool to start. I will never understand why preschool starts so much later--these are the kids who actually want to go to school, and then they have to wait for weeks. I felt so bad when the older kids all went to school and Ian asked, "How many days until I get to go to school," and I had to respond, ". . . twenty-five." That feels like an eternity to a four-year-old.

Singing . . . at music class. Luckily, while Ian was waiting around for preschool, his little music class started. I have always been in charge of my kids' musical education, and I usually start them on the piano when they're four or five years old. But a woman in our neighborhood has a Let's Play Music studio, and I decided to send Ian there for their three-year program. Not only does it provide an excellent musical foundation, but it's a fun social environment and instills an early love of music. Plus, as a piano teacher, I wanted to be somewhat familiar with the program so that when I have students start with me after they've gone through the program, I at least have a general idea of the skills and knowledge they already have. So I had two motives for having Ian do it. He has only been to two classes so far, but he already loves it. I think it's a great fit for him. 

Celebrating . . . the birthdays of Peck and Waddles. We don't have any August birthdays in our family . . . until Ian informed us about the birthdays of his beloved chicks, Peck and Waddles. We celebrated with a present (a small Lego set Ian was only too happy to help Waddles build) and chocolate cupcakes (made by Max). The next day, he told me it was his stuffed panda, Smithy's birthday, and I knew I had to put a halt to the festivities right then or we would never see an end.

Showing . . . The Glenn Miller Story to my kids. I love old classic movies, but I haven't done a very good job of introducing them to the boys. However, now that we have both a trombonist and clarinetist in the house (two instruments that feature heavily in this movie), I decided it was time for them to see this beloved favorite of mine. I had forgotten just how good it was (Jimmy Stewart and June Allyson are perfection), and my kids actually really liked it. At one point, I started to skip over one of the songs because it was getting late, and Aaron protested because he was enjoying the music so much: that Big Band sound, you know? Max got a little anxious at the end when he saw where the ending was headed (it doesn't matter how many times I see it--it's just so sad, every time), but all in all, it is such an enjoyable and inspiring story. 

Going . . . on a hike. We didn't go on any family hikes this summer, mostly because Aaron is not supposed to be around a lot of dust. But Ian and I finally went on a short one with my friend and her four-year-old and baby. Unfortunately, four-year-olds aren't known for their stamina, so it evolved into mostly playing on rocks, but Ian and George are the cutest little friends. 

Playing . . . soccer. We didn't play soccer at all last year, but I knew Clark was missing it, and when I had the chance to get him on a team with a couple of neighborhood friends, I jumped on it. He is so happy to be back to playing, and Mike's glad that, since only one of our kids is playing soccer, we only have to go to one game each Saturday instead of several. 

Running . . . cross country. Max signed up for cross country this fall. He didn't really want to, but there wasn't any other sport he was interested in, and I wanted him to do something active. I felt a little bad though when, a couple of days before it started, he asked, "So what exactly do you do in cross country?" He is not loving it and has been quick to assure us that he will never love it. Nevertheless, he has stuck with it and given his best and has actually already improved. So maybe he'll turn into a runner after all.

Eating . . . homemade ice cream. We got together with our neighbors for a homemade ice cream party. Mike made peach, and they made classic vanilla, and both were so good. Summer perfection. 

Ending . . . the month on a high note. After nearly two years, Aaron's Make-a-Wish was fulfilled. He wished for a shopping spree (after his wish to go to New Zealand was cancelled due to Covid). He decided on all of his items ahead of time, and then they were presented to him at Scheel's, who hosted the event. It was a super fun morning for our whole family, but it's too much to tell in one little paragraph, so I'll save the rest for its own blog post. 

And that's a wrap on another month. Despite the challenges of this year, 2021 is still flying by. 

Patience in the Process

Aug 29, 2021

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

Aug 15, 2021

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!

A Little of This and That in July

Aug 8, 2021

Looking back over July, I wish I would have pulled out my camera a bit more frequently. We didn't have much that was especially notable to document, but our regular life was pretty sweet, and I feel like we totally embraced the concept of "lazy days of summer." Our days were filled with things like . . . 

Shooting . . . off rockets. Our Fourth of July was rather underwhelming. No parades (because of crowds), no family parties (same reason), and no fireworks (because of the drought). I probably could have taken the many free hours to inspire the boys with tales of patriotic bravery, but I failed. In the end, Mike's sister saved our boredom by inviting us over for ice cream. And then the next morning, we made and launched paper rockets with some friends. And that seemed like enough for this year.

Attending . . . a diving class. One of Bradley's cousins began diving in June and recommended it to him. He was very interested and ended up doing the July session with her. In just the course of a month, he learned several dives, different approaches, and many techniques. I was most nervous watching Bradley do a backwards falling dive off of the three-meter, but luckily, he doesn't let fears inhibit him. The month ended with a little practice meet where everyone did several dives and were judged on their execution. (Somehow I ended up being the second judge along with the coach, even though I have no qualifications or experience whatsoever.) This diving class was perfect timing for the Olympics since it is always more fun to watch a sport when you have at least a little experience in it, and we thoroughly enjoyed watching all of the diving events. 

Spending . . . a few days at the cabin. One of my kids' main wishes for this summer was to go to the cabin. Luckily, Mike's parents spent most of July there and invited the boys to come stay with them for a few days. Aaron couldn't stay for the duration of the time for medical reasons, but we all spent the day there when we dropped off the other boys and again when we picked them up. They spent their time playing games, shooting BB guns, hunting for bugs, going on hikes, and playing in the stream. It was a good time all around (except maybe for Mike's parents who probably were grateful for the peace and quiet that came when they were finally all gone!). 

Buying . . . a suburban. Here's a little known fact about Mike: he loves searching for a good deal on a used car. So when I mentioned a couple of months ago that it might be nice to have a vehicle with a little more room for future road trips, he was happy to have something to look for in the classifieds. And after looking at and driving a bunch of them, he finally found one that was exactly what he wanted. Clark was thrilled about the sun roof ("I've always wanted one of these!!"), but other than that, it's nothing to get too excited about. It's fifteen years old, which is pretty typical of the vehicles Mike decides to buy. He just has no interest in new cars at all.  

Running . . .  around with friends. We moved right at the beginning of the pandemic last year. Clark was used to playing with a posse of friends every afternoon, but he didn't know anyone when we moved, and it wasn't a great time to be knocking on doors, inviting others to play. But all that has changed this summer. There are three other second graders right across the street from us, and finally, after more than a year of very little social time, Clark is on the move again, rounding up his friends every day for all kinds of adventures. Luckily, they've been able to play outside so I don't have to worry as much about Covid, and I'm so happy that my little extroverted child has an outlet once again for all of his social energy.

Playing . . . games with friends. While Clark has been running around the neighborhood, the older boys have been playing board and card games on the porch with our neighbors. It's unfortunate the temps haven't been a little cooler, but if they do it when the porch is shaded, it isn't too bad. They've been having great fun and have been able to share some of their favorite games as well as learn new ones. 

Having . . . a visitor at the pool. One day, Clark, Ian, and I were at our neighborhood pool. We pretty much had the pool to ourselves . . . except for a duck who thought the water was just as nice and inviting as we did. The lifeguards did everything they could to get the duck to leave, but even though he responded to their chase by flying around, he always landed back in the water. They eventually gave up, and the duck and swimmers shared the facilities for the afternoon. Clark thought it was pretty much the best day ever at the pool. 

Resurrecting . . . Bodie. You might remember that Clark received a beta fish for Christmas. He has loved that little fish and has cared for it to the best of his ability. Unfortunately, he's not really capable of cleaning the tank by himself, so a few weeks ago he was badgering Mike to clean it because it had been awhile and there was some buildup. It wasn't a high priority for Mike, so more days went by. Then Clark noticed that Bodie's fin was beginning to turn white. He freaked out. He was convinced that Bodie was sick. Mike brushed him off, saying that Bodie was fine, but Clark, ever the persistent one, eventually got Mike to look it up, and sure enough, discoloration on a beta is indicative of "fin rot." Sounds pleasant, right? By the time we found this out, it was too late to go to the store and get the medicine to treat it, and in the meantime, Bodie seemed to be fading fast. He was hardly moving at all and even went up into the filter, presumably to die. Clark was beside himself (until Mike promised to buy him a new fish, and then the possibility of something new and shiny totally distracted him--he's a rather fair weather friend). But miraculously, Bodie hung on until we could get the medicine, and within a few days, he seemed to be doing much better. Crisis averted . . . for now. 

Raising . . . another praying mantis. After the drama of last month, I thought we were done with any praying mantis for a good long while. But then Max found one on our kitchen window, and he couldn't let such a golden opportunity pass by. This one was a little bigger than the other ones he tried to keep, and consequently, she has been thriving. Max named her Patience, and he has been feeding her a variety of bugs every day. He loves watching her be as still as stone until she snatches her unsuspecting prey. 

Taking . . . a morning walk. After months of running religiously (either outside or on the treadmill), I had a mini-revelation: I don't like running. And since I've been dedicated to it for quite some time, it's safe to say I probably will never like it. When I run, I have to find something to distract myself the whole time: if I'm on the treadmill, a super engaging show; and if I'm running outside, some soul-pumping music. But one morning, I had a little chat with myself. I realized that the only reason I was running was for a little bit of exercise every day (I was a strict 20-minutes/2-miles kind of runner). I had no ambitions of running a marathon or toning my body or anything like that. So really, walking would give me the same benefits I was looking for, except that I would have the added benefit of being able to stay present in the moment instead of trying to escape for twenty minutes. So it would be not only physically healthy, but mentally as well. I switched to a 30-minute walk instead of a 20-minute run, and I love it so much. I don't bring my headphones. Instead I let my thoughts wander--sometimes to profound places, sometimes to trivial. I pay attention to the feeling of the rising sun on my back, the sound of birds in the trees, the beauty of our neighborhood. I have a favorite game of choosing one thing I love from every yard that I pass. Sometimes I focus in on what I can hear: shoes on pavement, wind in trees, bees buzzing, crickets chirping and then stopping as soon as I get too close. Basically, I am in love with this way of getting out and moving my body, and I'm so glad I gave myself permission to let go of what I thought I should be doing and trading it for something that fills me up in a real way. 

Watching . . . ALL of the Olympics. And that's not really an exaggeration. From opening to closing ceremonies, we watched every event we could find. We loved watching skateboarding, surfing, and sports climbing debut for the first time. We were so happy to see one of our favorite swimmers, Katie Ledecky, capture the gold again. We loved the tears from Caleb Dressel, Tom Daley's knitting in the stands, and the quiet victory of Sydney McLaughlin. The acts of sportsmanship and teamwork were inspiring. I basically gave my kids free rein for the entire two weeks. As soon as their jobs were done, they could watch as much Olympic-coverage as they wanted. And they watched a lot. It was just so much fun, and we're all looking forward to the Winter Olympics in just six months.

Holding . . . our family book club. This is our fourth summer of doing a book club as a family. It's always a bit tricky to find a book that Clark will be able to read and understand but that will still be interesting to Aaron and Mike. This year I landed on a good one: When Stars are Scattered by Omar Mohamed and Victoria Jamieson. Because of the graphic novel format, it was very accessible to Clark, but the content about two brothers growing up in a refugee camp in Kenya was thought-provoking and inspiring to all of us. We had a good discussion, but I'm not too naive to realize that my kids are really just in it for the food. 

Losing . . . my enthusiasm for knitting, and I think I know why. I started a blanket, which I was initially excited about, but after a couple of inches, I just wasn't happy with the way it was looking. I've still been working on it, but definitely not every day and only when I don't have something else to work on. I still might frog the whole thing ("frog" is knitting lingo for "unravel it"). Besides the blanket, I was also working on two little items to give as baby gifts. The process of knitting them wasn't horrible, but the finished objects left me dissatisfied. I can't tell if they're cute or not. Having two "meh" projects has just zapped my knitting energy. Just like slogging through a book that isn't enjoyable, I think maybe I've learned my lesson with not pushing through a project that isn't making me excited.

Meeting . . . all of the new babies. We had three babies born in our families within a three-week span, and it's just the best. There's nothing like holding a new baby. Clark has been especially obsessed. He would hold any one of them all day if he had the chance. 

Gathering . . . ideas for our yard. Since moving into our house over a year ago, we (mostly Mike) have done a lot of work on our yard. But there is still so much that needs to be done. We held off for most of the summer because of the drought, but we're trying to make some plans so we can maximize our time in the fall. One Saturday, we went to the Conservation Garden Park, which has a bunch of layouts and designs for appropriate plants and water conservation in Utah's climate. It was super helpful. 

Celebrating . . . Aaron's 13th birthday! Every time I think about him being thirteen, I'm like, "Wait . . . what?!" But he sure is a nice teenager so far. He received all sorts of fun presents, including his own ukulele (he was borrowing mine while doing lessons with my dad this summer). Mike borrowed a go-cart from a friend and set up a course in a parking lot. The boys timed themselves on the course and raced it over and over for faster times. When Mike asked Aaron what he wanted to eat on his birthday, the only thing he could think of was bacon, so Mike creatively included bacon in every meal (except for dessert,  which was cherry pie and vanilla ice cream because Aaron doesn't like cake). 

I have to admit I was pretty sad to see July come to a close. It was a good month, and summer has gone by too fast. 

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