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." 

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!

A Little of This and That in July

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. 

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 . . . 

A Little of This and That in June

June decided to include a major heat wave (multiple days of 100+ degrees). I am summer's most devoted fan, but even I thought that was a little cruel. Nevertheless, we managed to enjoy the outside when it was nice and stay inside when it wasn't. Some of our activities included . . . 

Celebrating . . . the last day of school. We've all said it: It has been the weirdest school year in the history of ever. But somehow, we made it through and actually far better than I expected. (I honestly thought our school would shut down within two weeks of opening in the fall, but there were very few cases in the school and never enough at one time to require a closure. In fact, it was probably the healthiest school year we've ever had.) My kids thrived at school, and if they ever did need to miss, they easily switched to virtual for a day or two and stayed completely caught up. I give all of the credit to my kids' amazing teachers, who really rose to the challenge and made this a happy year to remember. Our only regret is that Aaron was only able to go to the first half of the school year. This, of course, had nothing to do with Covid. He didn't like being home, but I'm proud of him for finishing strong.

Saying . . . goodbye to elementary school. Max is off to junior high in the fall, and he is feeling quite sentimental about his elementary years coming to a close. I can see why. He had a class full of great kids who he moved up through the grades with. He had only amazing teachers. And he really excelled academically. Promotion included many awards, but the one he was most proud of was the gold math pin, which placed him in the top 2% in the country. 

Kicking . . . off our family summer reading program. The boys didn't even wait for the last day of school before they started tracking their reading in order to cash in for prizes. Two hours of reading will get them one prize, which might seem like I'm making them read a lot for just one little prize, but I would go broke if it was any less because these kids can rack up a lot of hours in a week. Last year, Clark only had to read one hour for a prize, but he got bumped up to the two-hour group this year, and he's been doing great with it. Ian just has to complete one reading lesson for a prize. (Here's more about what we do if you're interested.)

Completing . . . a session of swimming lessons. Ian and Clark spent the first two weeks of June in swimming lessons. Because of the pandemic, we completely skipped lessons last year, so they were a little behind. But they both made a lot of progress over just a few days. Ian still needs quite a bit more practice to become an independent swimmer, but he no longer has any reservations about putting his face in the water . . . and he launches himself off the diving board without fear.

Dropping . . . the ball for Father's Day. I didn't try to--the boys filled out their usual questionnaires that I then laminate for keepsakes. And we picked out a few presents we thought Mike would like. But some of the boys felt a little under the weather with colds, and I spent most of the afternoon in bed because I was so tired from getting up early to do Aaron's medication, and all I did to help Mike with dinner was set the table. So yeah, it definitely felt like he didn't get quite the attention he deserves for how much we all love and appreciate him. We also saw my dad for a little bit in the afternoon, which was nice, so the day wasn't a total bomb. 

Experiencing . . . quite a bit of drama with praying mantises. If you know one thing about Max, it is that he loves bugs. For his birthday in March, Mike and I gave him a praying mantis egg case that was supposed to hatch in 3-12 weeks. Max followed all of the instructions for where to put it and how to keep its environment humid, but week after week went by without any mantises. Meanwhile, one of his good friends was lucky enough to find a mantis case in his yard. His family was leaving for a couple of summer trips, so he asked if Max wanted the egg case. Well, two weeks after that, I was walking up the stairs and I glanced into Max's room, and I saw the mantis cage teeming with tiny mantises. I quickly called to Max, and it was a thrilling, exciting moment as we all huddled around the cage and watched probably a hundred mantises moving around. We decided to release most of the mantises in our yard and Max's friend's yard. Bradley helped with the release because it turned out that Max was actually pretty anxious about the whole situation: he wanted to make sure he was doing the right thing in the right way, and so he either walked around saying, "I don't know what to do!" or he did "research" on the computer. We kept eight mantises because we were hoping that at least a couple would survive--one for Max, and one for his friend. We got some fruit flies to feed them, but they honestly seemed a little big for the tiny mantises. We also attempted some aphids that we found on a rose bush. But day after day, those little mantises didn't seem to be catching and eating anything. And one by one, they slowly faded and died. Finally, we were down to only one mantis. It was Felix, the one that Max was most attached to. He passed Felix along to his friend (which was an emotional ordeal in and of itself), but when they realized that Felix was the only mantis that had made it, they passed him back to Max, along with another, slightly bigger mantis they had found in their yard (these are truly the nicest, most selfless friends). Unfortunately, the next day, Felix also bit the dust. But the other mantis, which he named Helix, seemed to be thriving. She always caught and ate the fruit flies Max put into her cage, and she seemed to be growing. But a week after we got her, Max went into his room and found her laying at the bottom of the cage. It was completely unexpected because she seemed to be doing so well, which made it all the more tragic. Max was completely devastated. And me? I was exhausted from the emotional and physical toll that came with trying, and failing, to keep little baby mantises alive. I think we're done with trying to raise our own mantises (or not . . . stay tuned for July).

Swimming . . . on a recreational swim team. Bradley has always wanted to try swim team, and this seemed like the perfect summer for it since we didn't have any major vacations planned that would force him to miss. He enjoyed it immensely, so much so that I signed him up for July as well. It's close enough that he can just scooter over to it on his own, which is a good thing since they're tearing down the high school right next to it so parking is virtually impossible. The construction is intense and completely surrounds the pool, so I feel a little like I'm sending him to an apocalyptic world, but he navigates it like a champ. They had a swim meet at the end of the month. It was his first one, so he didn't do amazing in it, but that's what practice is for, right?

 

Working . . . on summer goals. As you know, this has always been a big part of our summer, but I have to admit that our enthusiasm this year has been a little halfhearted. Aaron still hasn't even made any goals because he was in the hospital when I did it with the other kids. And although some goals have been eagerly checked off, there are many that haven't even been touched. So I probably won't be sharing them this year like I have in years past. Getting the kids to stay on top of their goals actually requires a lot of time, attention, and effort from me, and I just haven't had the energy for it. 

Taking . . . ukulele lessons. One of Bradley's summer goals was to learn how to play the ukulele. I asked my dad if he wanted to head up Bradley's instruction since the ukulele is one of his great loves. When Aaron heard what was going on, he wanted to join in on the fun. He had tinkered around a little on a ukulele at the hospital but never really practiced it in a serious way. So this summer, my dad has been coming to our house every Sunday for a new lesson, and both Bradley and Aaron having been making great progress. They have learned a lot of songs and are getting a lot out of joy out of playing and singing with their grandpa. 

Participating . . . in band camp. Max is planning on taking band in sixth grade this fall. He has never played a band instrument, so my sister-in-law suggested signing him up for an introductory band camp (no prior instrument experience needed). Max wants to play the saxophone, but the band director recommended beginning on clarinet. So we borrowed a clarinet, and Max went every weekday for an hour and a half through the month of June. And I was pretty floored by the progress he made during that timespan. He went from not being able to push enough air through the clarinet to even produce a sound to performing real music with the entire band. One nice thing about the camp was that they had enough teachers that they were able to separate the kids by instrument, so they were able to use the time really productively. I feel like he's so much better prepared for band this fall. He's really fallen in love with it. The camp culminated with a concert which showcased both the beginning band and orchestra and the junior and senior groups. I've been to my fair share of beginning band concerts, and this was by far the least painful one I've been to; I would even call it enjoyable. 

Enjoying . . . the light. Want to know one of my favorite things about summer? The light. I love waking up to sunshine instead of pitch darkness. And I love staying out until 9:30 or 10:00 because of the lingering light (and cooling temps!). This is why I will always love summer: it has the light, and winter does not.

Creating . . . not a lot. I've lost some of my knitting and sewing mojo. Sometimes it seems like it just takes too much effort to get it out (which has never been an issue for me before--at least with knitting). Sometimes I get to the end of the day and I realize that I didn't knit at all (highly unusual). I don't think I'm falling out of love with knitting. I think I just need to start a few new projects. I always do better when I have a variety to choose from, and right now, I basically only have one. In spite of my waning enthusiasm, I did manage to finish a sweater I'd been working on for a couple of months (and I sewed a skirt to pair with it!).  

Discussing . . . conference talks with my parents and siblings. My brother organized a family text thread where we discuss one talk from General Conference every week. He came up with a schedule and assigned a talk to each week. We all read it and then text one thought or quote that we liked from it. It's very low pressure, but it has still helped me study rather than just read, and I love getting insights from everyone else as well. 

Winning . . . two gift cards in a couple of intense rounds of hospital HORSE. During Aaron's most recent hospital stay, the child life specialist challenged him to a couple games of HORSE. The prize? A gift card to Chick-fil-A and a gift card to Cold Stone. They battled it out, and the second game was especially tight, but Aaron came out on top and claimed his prizes. (So grateful for a child life specialist who knows how to relate to teenagers because, spoiler, not all of them do.) 

Rejoicing . . . in the birth of three new babies--who all happened to be born on the same day in June! They belonged to one of my dearest friends (a girl), my brother and his wife (a girl), and Mike's brother and his wife (a boy). Only one of them was actually scheduled to be born on that day, but I guess the other two just knew it would be a good day for a birthday. 

Obsessing . . . over numbers. All of my kids have their own unique interests and strengths. Sometimes they try something new and it turns out to be something they love. But sometimes their talent emerges with absolutely no encouragement, and it is always a little bit thrilling when this happens. Although I have been doing reading lessons with Ian (and he's doing really well), his real love is numbers. He can't get enough of them. He notices them everywhere. He counts for fun ("Dad! It took one hundred and fifty-four from Sonja's house to our house!"). He pages through the hymnal at church, just so he can find his favorite number (222). He alerts us all to the speed limit. He loves paint-by-sticker books--the more numbers, the better. He can identify any number from 0 to 1000. He counts forward and backward in unusual ways (one day he started at 999 and counted down like this: 999, 888, 777, etc.). At first, I barely paid attention to his fascination with numbers, but as he started to do more sophisticated and complicated things, I couldn't help but take notice. It's one of those things that I can take absolutely no credit for, and because of that, I just get to enjoy watching him do the thing he loves. (I had to laugh when I was helping him set his goals for the summer, and I referred back to Clark's goals when he was four: "Identify numbers 1 to 20" and "Learn to count to 30." As you can imagine, I did not set any numbers goals for Ian. He's doing a great job with that on his own.)

Welcoming . . . James home! Our nephew, James, got home at the end of the month. He had been serving a two-year mission for our church. He began his mission in Perth, Australia; then he got sent home due to Covid; and he was eventually reassigned to North Carolina. Big family gatherings have been tricky because of Aaron's health, so we all couldn't be there for his arrival, but I did send Max and Clark because I knew they wouldn't want to miss it. 

And that's all I've got. I'm so glad to be able to spend these lazy summer days with these boys that I love so much. They're truly a joy to be around.