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. 

Intense Longing

I spent part of last week reading a really phenomenal graphic novel called, When Stars are Scattered. It is based on the true experience of Omar Mohamed and his brother in a refugee camp in Kenya. They were born in Somalia but had to flee from it when they were still quite young. Their father was killed, and they were separated from their mother, so at four years old, Omar became the protector and provider for his brother. 

I usually think of a refugee camp as being temporary, a kind of stepping stone towards resettlement. But for Omar and Hassan, and most of the other residents in Dadaab, "temporary" turns into a lifetime . . . or at least their entire childhoods. The days exude a strained monotony: limited food, no resources, lack of progression. It is demoralizing. Many of the people obsess over getting out. It's all they can think about. 

Omar says there is a word for this "intense longing to be resettled." It is buufis. He says, "It's almost like your mind is already living somewhere else, while your body is stuck in a refugee camp . . . It drives some people insane." 

I hesitate to make even the slightest comparison between our situation and that of living in a refugee camp. Really, they are nothing the same. And yet, when I read Omar's description of buufis, it resonated with many of my own feelings right now. 

This week, the 11-13 year-old boys in our neighborhood went to camp. Mike is one of the leaders for this age group. Under normal circumstances, both he and Aaron would have gone together. It is something they've been waiting for their whole lives--three days of water and sun and campfires and exploring. A chance to bond as father and son while also strengthening friendships with peers and neighbors. 

We've missed out on a lot of things over the last two years, but for some reason, this one hit me hard. It just seemed so unfair. I wanted Aaron to be there. I wanted Mike to be there. (In fact, it was very inconvenient that Mike couldn't go because they were short on leaders and had to scramble to fill his spot.)

But we're not to the point where we could even briefly consider the possibility. Everything about Aaron's situation is so volatile right now. Things can change in an instant, and it feels like we're always walking on the edge of a cliff.

We had no unexpected hospital visits this past week, but we spent the first half just holding our breath. Aaron really felt pretty miserable until about Thursday: extreme fatigue, frequent nausea, headaches/lightheadedness, limited appetite, and a temperature that continually flirted with danger.

At his appointment on Thursday, his weight had dropped. His doctor said, "Aaron, I know you don't feel like eating, but if you don't increase the calories, I will have to put in a feeding tube. Don't force my hand. I will apologize the whole time I'm doing it, but I'll still do it."

This little threat lit a fire under Aaron. I feel bad for him because he can't seem to eat more than half a sandwich or one bowl of cereal at a time, but he has been trying to eat little snacks in between meals. I think his calorie intake has probably doubled this weekend, so hopefully it will be enough to convince the doctor that he's not wasting away.

One complication with all of this is diabetes. When Dr. R. was trying to convince Aaron to eat, he said, "I don't care what you eat! Get all of the sugary drinks you want and just sip on them throughout the day." "But he has diabetes," Mike reminded him. "Ack, diabetes! I forgot!" They always forget about the diabetes. It just isn't on their standard list of things to check in about. (However, even though sugary drinks might not be the best idea, Mike was able to convince the doctor to let Aaron have fast food again as a way to encourage eating, so there was still one win.)

But speaking of diabetes, it continues to baffle everyone involved. During Aaron's recent illness, we ended up taking him off of insulin completely (with our doctor's permission) because he was eating so little that his nighttime blood sugar was right around 100, and it didn't feel safe to give him his long-acting dose before bed. 

We actually had our first official appointment with the endocrinologist on Monday. We've seen her many times when Aaron has been admitted, and we've been in regular contact with the clinic, but this was our first time going to a real appointment. Aaron has been wearing a continuous glucose monitor for the last month, and so the doctor could easily pull up his numbers. When the doctor saw that his glucose was in the target range 93% of the time, she said, and I quote, "This doesn't even look like someone who has diabetes." 

They drew an A1C (the test that measures your average glucose over the last three months). When they did this test in May, it was completely unhelpful because Aaron had been living on blood transfusions for four months. It really was kind of pointless since there was no way to accurately interpret the information. But this time, Aaron hasn't had a transfusion in over a month. So while the A1C is still not a completely clear picture, it's more accurate than it was.

When the results came back, the doctor glanced at them and got very excited. She said, "Aaron! I have something to show you!" (Aaron, unfortunately, was not super engaged because he felt like garbage.) "Look at this, Aaron! Your A1C is 5.4%! That is a totally normal A1C. It isn't even in the pre-diabetic range!"

No one is saying yet that Aaron is cured or that he doesn't actually have Type 1 diabetes. At this point, the facts remain that he has two of the Type 1 antibodies and his body has trouble managing his glucose. It's obvious that he is still producing some insulin on his own, but it isn't enough to bring his glucose down quickly after a meal. Regardless, his blood sugar is very easy to manage at the moment, and we'll take it because our attention is needed elsewhere. 

As the photos from deacons' camp rolled in this weekend, I felt an "intense longing," not for resettlement, but nevertheless for a life that is not currently ours. I was jealous and angry. I craved the thing we could not have. Caught up in my bitter emotions, I was so obsessed with "what should have been" instead of grateful for: Aaron's normal platelet count, which allowed him to get safely back on his electric scooter after months of being forbidden; a heart rate that is finally back in the green; a returning appetite; and tiny baby hairs cropping up all over his head.

On Friday night, Mike set up the tent in the backyard for him and his boys. He wasn't trying to make up for or recreate the missed days of camp. It was just something different to break up the normal routine. Mike filled a box with saline flushes, heparins, medication, and pumps so that he could keep Aaron on his regular schedule without having to come inside. It couldn't really be called "adventurous," but they still seemed to have plenty of fun. 

Later on in When Stars are Scattered, Omar said, "I've learned that the biggest surprises in life can come when you least expect them. Which is why I was completely unprepared for what would happen next." The camp of Dadaab was filled with thousands of people, and only a tiny percentage ever got the chance for resettlement. But one day Omar was interrupted at school with the news, "You have an interview with the UN for resettlement!" For him, the process ended up taking several years, but this was the first step. And he didn't even have an inkling it was coming. 

It reminded me of this quote from The Horse and His Boy by C.S. Lewis: "When things go wrong, you'll find they usually go on getting worse for some time; but when things once start going right they often go on getting better and better."

And also this, from a random stranger I follow on Instagram: "The thing is, you truly never know what might be around the next corner. When people told me that in harder chapters of my life I didn't believe them. I thought they were ridiculous and naive. But it's true, there are always things ahead that we cannot yet imagine." 

I can't see the future. I don't know what our lives will look like in one, three, five years. I hope we're about to get on the "things going right" track. But in the meantime, I don't want to live out my days feeling buufis. I want to concentrate more on my actual present than on some alternate reality. It might not be my ideal, either for myself or my family, but it is mine, and it's up to me to make the most of it. 

A Post With Graphs Instead of Photos Can Only Mean One Thing

Not too long ago, Amy mentioned to me that she was hoping she could soon stop posting medical updates every week.  Unfortunately, we didn’t fulfill her real wish that there would be no medical updates to give, but I volunteered to do the update this week, partly to give her a break and partly to let everyone hear my perspective.

After flirting with illness for several days last weekend, Aaron finally ran a temperature over 101.5 degrees on Tuesday, which meant we had to be admitted to the hospital again.  He had several more fevers over the next several days which meant we were hospitalized until Saturday afternoon. 

He is so done with the hospital.  When we knew we had to go in, it was all we could do to convince him that they have good reasons for this decision and that it was in his best interest to go.  He literally dragged his feet the whole way in from the parking lot.  I had to keep glancing back over my shoulder to make sure he was still following me in. 

That is a stark contrast to how he acted when we got to leave yesterday.  When he got the green light to go, he marched briskly out.  I basically had to jog to try keep up with him, but I constantly fell behind trying to juggle our belongings.  He didn’t once look back to make sure I was following him out.  He didn’t care one bit.  His eyes were fixed on that door and he wasn’t going to break stride, probably out of fear that if he slowed or made eye contact with anyone, they could change their mind and make him stay longer.

I just want to go on the record that my attitude towards Primary Children’s Hospital is much more positive than Aaron’s.  I have a very tender spot in my heart for that place and all the caregivers there.  It is true that some of my darkest days have been spent there, but I have been helped through those hard times by both earthly and heavenly angels.  Each setback so far has been accompanied with miraculous healings, peaceful assurances, and some of my most special spiritual experiences.  It feels almost like a temple there to me, probably because I see that the people are so focused on healing and caring for all those sick little kids.  Christ has that same focus. 

I am not as good as Amy at taking pictures to document our journey, but I am better at making graphs.  I’m including some charts that show Aaron’s progress in several areas since his transplant. 

This one shows how his cytomegalovirus numbers have been doing.  He’s almost back down to zero.  We’re hoping that happens soon.

These last three show his cell counts (note:  hemoglobin is used instead of red blood cell count).  The green part of each chart indicates where he needs to be to get into normal range.  The red lines indicate when he had a transfusion.

Overall, he still has a ways to go for his counts to be normal, but he is on a good upward trend. Even his recent infections and hospital stays haven't done much to derail his progress.  Good job, Aaron.

Groundhog Day

It feels like we've entered some sort of parallel universe. While the rest of the world has left Covid behind and is going on all of the vacations, participating in all of the activities, and hanging out with all of the people, we are trapped.

We are still wearing masks; we are kept on a very short leash from home; and we do the same things over and over again, day after day. It feels very much like we're living our own version of Groundhog Day. It's as if we think if we repeat the sequence enough times, we will eventually break the cycle.

Maybe we will. 

But right now it feels pretty never-ending. 

We have seen very little change in Aaron's counts this week: some numbers went up, some went down, but most stayed about the same.

Of particular interest is his CMV number, which went up from 3000 to 4000 on Monday, but then happily made a big drop on Thursday from 4000 to 1300. Unfortunately, it looks like he maybe caught something else since he's had a headache the last two days, has been tired, and felt pretty nauseous this morning. We're checking regularly for the two big red flags (fever for bone marrow transplant, ketones for diabetes), but so far, he's been fine. He's drinking lots of fluids and resting and hopefully we'll figure out if something more is going on when he's at his appointment tomorrow. 

I'm afraid this post probably sounds like a bit of a downer. That's not what I meant it to be. I think our whole family is just feeling a little beat down at the moment as we continue to do the work and hope for positive results soon. 

I try to remind myself that this is all part of the process. It's slow and tedious and often discouraging. It is not a quick fix. This is partly why it was so devastating when Aaron relapsed in January: because we'd already been through this process once before and we knew how slow and tedious and often discouraging it could be. 

But we're continuing to plug along, one day at a time. The good news is we actually really love to spend time together, so we're continuing to make many happy memories, albeit through simple ways.

(If I'm being completely honest, the real disappointment of the week (at least in Aaron's opinion) had little to do with counts and everything to do with the Jazz being eliminated from the playoffs. He took it hard.)

Add It to the Schedule

If you want the short version of this week, here it is: Aaron came home on Friday. He still has CMV. We're giving him infusions three times a day. His blood counts continue to improve.

For those of you who like more details, here is the expanded version:

The CMV number is checked twice a week. A week ago on Thursday, it had gone down, so we thought (hoped) it would run its course quickly. But then on Monday, it had gone back up. The doctors thought Aaron would need at least another week in the hospital before they would consider sending him home.

But they changed their minds on Thursday. Part of the reason Aaron had to be hospitalized in the first place was because the anti-viral medication can be really hard on kidneys. But Aaron's kidneys had handled it really well, and so the team was willing to let him go home. Truly, the only reason he was still in the hospital was to get these infusions every eight hours, and we could just as easily give those to him at home. His virus number went back down on Thursday, so they put everything in place for him to go home on Friday. 

I knew our biggest hurdle was going to be getting the medication delivered to our home on time. We've dealt with insurance and home care many times before, and it often requires a million phone calls and pre-authorizations and approvals and then more phone calls before it actually gets set in motion. 

Mike and Aaron got home around 11:30 on Friday morning. Although Mike and the team had tried to get things set up well in advance, the time for Aaron's first infusion came and went with no medication in sight. The home health nurse showed up to help us learn how to use the pump, but we didn't have the pump yet, and a call from the pharmacy said it would be at least an hour before they would be at our house. So the nurse left.

We waited. We literally just sat around, watching the street outside our window, willing the pharmacy van to round the corner. Another nurse came. As usual, it was the nurses who were the ones who could be counted on. At this point, we at least knew that the van had been loaded and was on its way and that we were supposedly the first stop. 

When it finally arrived, the nurse jumped out of her car and walked with the pharmacist up to our house. I could hear the pharmacist apologizing profusely. By this time, the dose was three hours late. But the reason why the pharmacist was apologizing was because they'd actually forgotten to load the box with the medication. We had the pumps, the flushes, the heparins, and other supplies, but no medication. She said someone else was rushing it over.

As I already mentioned, this anti-viral medication (foscarnet) is really hard on kidneys, so a bolus of fluids has to be given directly before every infusion. This is a high volume of fluids given over a short period of time. The bolus takes an hour, and then the infusion takes another hour. 

So finally, more than four hours late, we were finally able to get the pump hooked up and the bolus running. The nurse helped us get the other pump primed and ready to go with the foscarnet, and then she left.

With so many glitches and setbacks, we should have just expected one more. When the bolus was done, Mike hooked Aaron up to the foscarnet, but the pump wouldn't start. Even though the nurse had set it up, it had somehow reverted back to its original settings, which required an ID number. Unfortunately, we didn't have this number because the pharmacy doesn't trust parents with it. But we had to have that number, and we had to have it right then.

So Mike called up the pharmacy. He is not what you would normally call a difficult customer, but he was not hanging up without that number. He explained the situation in a tone that indicated that there was no other option, and I'm honestly not sure how they decided they could make an exception, but I'm proud to say that in this case they put the patient over protocol.  I'm sure this was against the rules, and I hope no one got in trouble for it.

Aside from that super delayed dose, everything else has gone smoothly, but it is another thing in Aaron's day for us to keep track of. In addition to the schedule I laid out a couple of weeks ago, we now have:

5:00am: Start bolus

6:00am: Start foscarnet

1:00pm: Start bolus

2:00pm: Start foscarnet

9:00pm: Start bolus

10:00pm: Start foscarnet

Since he also has magnesium and micafungen that he gets every day through his central line, he is hooked up for a total of eight hours every day. 

You might remember that when Aaron had his first transplant, he had to get his central line replaced right around Day +42. At the time, I asked the doctors if we could just get it removed instead of replaced, and they couldn't believe I would even suggest such a thing. They said they would never remove the line so early in the transplant process because things happen and when they need it, they need it right then.

Back then, I didn't really get it because Aaron's central line wasn't being used for much, and it just seemed like one more hassle to flush and heparin lock it twice every day for "just in case." 

But now, I get it. Aaron is at Day +51 today, and this time around, his central line is still in high demand, and we're grateful for it. 

But having to be responsible for a full schedule of infusions is still infinitely preferable to being in the hospital. When Aaron got home, the boys all gathered around him, and they just hung out for a couple of hours. Max pulled out his clarinet (which he just started learning how to play this week) and Aaron got out his trombone, and they jammed to "Mary Had a Little Lamb," which is one of the only songs Max knows. They examined Lego sets and read through almost an entire book of riddles. Mike and I marveled that they didn't even think about screens (even though Aaron had come home with a Nintendo Switch--a generous gift from a friend). They just wanted to be together. 

But speaking of the hospital, Aaron had to be there for a total of ten days, which felt like a lot, but in many ways, it was far better than when he was there for transplant. For one, he didn't feel sick at all (except for one short bout of nausea, probably due to pentamidine). For another, because his white blood count looked good (an ANC of 2100 on Friday!), he was given free rein of the hospital. He could leave the unit and walk the hallways. He could go outside. He went into the Ronald McDonald room. And he and Mike spent an hour in the Forever Young Zone playing foosball and air hockey and other games. He's actually never had that much freedom in the hospital, so even though he's spent a big chunk of the last two years there, his experience was still fairly limited. 

When I told Ian that Aaron was coming home from the hospital, he said, "Oh! And now he'll never have to go back?" I wish I could make that promise, but we know that transplants have a way of surprising us. But even though I can't promise he'll never have to go back, he's definitely on the right track to eventually get to say goodbye forever. 

Unexpected News (of the Good and Bad Variety)

The other day Maxwell said, "No matter how low I put my expectations, I always need to put them lower."

He's not always a glass-half-full kind of guy, if you couldn't tell. He likes to make plans, and when those don't pan out, he takes it personally (I believe the above was said in response to my refusal to get Chick-fil-A for dinner). 

Much as I don't want to admit it, I often fall into the same camp as Max. I spend time in a pessimistic headspace, hoping to avoid the crash that follows a disappointment. I'm not saying that this makes the disappointment any easier, but at least you feel like you were somehow slightly prepared for it.

But even I was caught off guard by how things went down at Aaron's appointment on Tuesday. The day before had been Memorial Day, and we had spent it in what seemed like an almost normal way: lawn games, frozen treats, water guns, grilled hot dogs, etc. Aaron seemed to have boundless energy. When the rest of the boys got tired of playing, he was still ready for more. I have to admit, I was feeling like we might get to have a somewhat typical summer after all.

But if there's one thing I need to remember, it's that a transplant makes its own rules, and you never know when it's going to throw a curve ball. Maybe there's some wisdom in Max's advice--just knock down your expectations by a few notches, and maybe you'll be about right. 

At every appointment, they draw labs that check for three types of viruses: Epstein Barr, adenovirus, and cytomegalovirus (CMV). These can be especially damaging to a new transplant, and so they want to catch them as soon as possible. 

Aaron's CMV number has always been positive, but it was dormant. From Max's lab work, we knew he also had a dormant case of it. There's a high chance that anyone reading this probably does, too.

But on Tuesday, the team came in and said that the virus number had gone up, meaning it had been reactivated and needed immediate hospitalization and treatment. CMV is not uncommon for transplant patients, but we never dealt with it during the first transplant, so I didn't even know it was something I could worry about. 

The treatment for it requires three infusions a day. The anti-viral medication can be very hard on kidneys, so a high volume of fluids must also be given before each infusion.

Even though Aaron felt totally fine and wasn't experiencing any symptoms, he had to be admitted back into the ICS. We had not been anticipating a hospital stay at all, so to hear the news, "We have to admit him. He's going to be here for at least a week, but more likely two or three," was hard. We were grateful that they had caught it so fast, but there's nothing quite like being cooped up in a hospital room when you don't even feel sick. 

I don't have a lot of stories or tidbits to share from the hospital this week because I haven't been there. Mike has been holding down the hospital fort, and I've been holding down the home fort. We had intended to tag team like we usually do, but Maxwell woke up vomiting early Friday morning, so we couldn't chance a possible transmission of whatever he had. I get the daily (sometimes hourly) reports from Mike, but it's not the same as being there.

I'm not going to pretend this hasn't been a blow to our morale. It's hard to just get handed a multi-week hospital stay without any sort of advanced notice. Aaron had to rely on The Cosby Show and Nintendo for the first few days because the Lego well had dried up (thanks, Mom, for replenishing it!). 

There's a part of me that feels like we should have kept this possibility in the back of our minds. We should have put those expectations a little bit lower.

But then sometimes . . . sometimes . . . you set your expectations low, and they end up being wildly exceeded. 

Remember last week when I said that Dr. R. bluntly told me that Aaron's T-cells would never be 100% donor? 

We finally got the results back from Aaron's first chimerism, and in Dr. R's words, "You got a perfect score, Aaron!" His chimerism was 100% donor across the board: platelets, red blood cells, neutrophils, CD-33, and yes, even T-cells. We were all in total, unbelievable, blissful shock. The thing we had been told was never going to happen actually had. Our expectations were blown apart in the best possible way.

Of course, a few minutes after we had received the news, I started to doubt it (Max and I have the same genes, remember?). I called Mike, "I think there must have been something wrong with the test. They misreported the results. Or they didn't interpret them correctly in the first place."

But after discussing this with Mike and the team, I think I finally feel a measure of peace about it and can fully embrace this good news. When Mike questioned Dr. R. about what he said last week, he said, "Well, I was wrong. 100% donor T-cells are rare, but it can still happen."

When you think about it, it actually makes sense that Aaron would be more likely to have 100% donor T-cells because this is his second transplant with the same donor. Maxwell's T-cells were already a big percentage of Aaron's bone marrow. If they were, say, 87%, and Aaron's T-cells were 13%, then think about what happened when Aaron's bone marrow was wiped out a second time with chemo and radiation. Most of the T-cells were destroyed, but if any were left, then there was a high probability they actually belonged to Max, not Aaron. 

Although we are celebrating these donor T-cells, we know that having them at 100% actually puts Aaron at greater risk for GVHD. However, it significantly decreases his risk of having another relapse like last time, so of course we are looking at it as a very good thing.

The other thing to consider is that just because the T-cells are 100% donor right now doesn't mean they always will be. For one thing, a blood test is not as accurate as a bone marrow biopsy. You might remember that when Aaron relapsed, we had done a blood chimerism that still looked good, but it was the biopsy that showed the real story. Additionally, Aaron's bone marrow is still so new and the cells in it are still so sparse that there could be a few of his own T-cells that are kicking around that were not detected on a blood test but could eventually multiply into something more.

However, regardless of possible changes in the future, he is still in a really good place right now. When his  initial chimerism came back after his first transplant, the T-cells were only 47% Maxwell's--not even quite half. So it's obvious that he is beginning in a much better place with this transplant, and we couldn't be happier.

And would you like even more good news? Because I've got some. Aaron's platelets started inching their way up this week. He is currently sitting at 42, and he hasn't needed a platelet transfusion in over two weeks. When you consider that he was needing transfusions every 2-3 days in the weeks pre- and post-transplant, that's pretty big news. 

So that's it: the unexpected bad news and unexpected good news of the week. I keep thinking I'm going to run out of things to write updates about, but so far, things haven't been quite as boring as we would like.