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.

A Little of This and That in April and May

Ian and cousin, Rosie 

April and May were mostly consumed by hospital stays and appointments, which I've already written about extensively in other posts. These are typically my very favorite months of the year (I am #teamspring all the way), but we just didn't have the time or energy to do the things we normally would have. Our kids have been so understanding and adaptable. Hopefully, these days are making them resilient and not traumatized. But maybe a little of both. 

We did manage to do a few other things over the last two months, which can be summarized as follows:

Celebrating . . . Easter. Snow always makes Christmas feel magical. And you know what makes Easter feel magical? Blues skies, mild temperatures, and the smell of cherry blossoms. And that's what we got this year. We just soaked up every moment. We dyed eggs, did Easter baskets, made empty tomb cookies (a tradition borrowed from my childhood), counted down the days with our Easter tree, and enjoyed Easter dinner as a family. The boys did several egg hunts for each other. They each took a turn hiding and finding eggs, which made it turn into five egg hunts instead of just one and stretched it out to two hours long. I listened to my Easter playlist on repeat, and we read from the Gospels as a family. We were fortunate to be able to spend the whole day together with no unplanned trips to the hospital, and that made the day even more special. 

Watching . . . General Conference. This coincided with Easter this year, which happens every so often, and I love it when it does. It just makes the entire weekend feel spiritual and uplifting. Mike made cinnamon rolls on both Saturday and Sunday. Bradley and I put together a 1000-piece Lego mini-figure puzzle. And Max took copious notes through all four sessions (no surprise, if you know him in real life). One of my favorite talks was by Elder Dale G. Renlund about how life isn't fair but Jesus makes everything right. 

Showing . . . support. Maxwell has an amazing group of friends. When they were in third grade, they dubbed themselves the Chicken-Nugget-Sandwich-Boys (I believe it might have started during a lunch bunch they had with their teacher). When he first told me about their name, I laughed and thought it would surely be a short-lived thing. Not so. Two years later, the CNSB are just as loyal, nerdy, and strange as ever. Before Max's bone marrow harvest, they gave him a big gift basket filled with just the right things to entertain and amuse him (they get his sense of humor far better than I do). A few days after the harvest, they all showed up on our porch in matching T-shirts, which, appropriately, had a chicken nugget hero on them. It will be so interesting to see if the CNSB can survive junior high next year, but they've had a good run regardless. As a mom, I am just so grateful for good friends for my kids. 

Building . . . a robot. Clark and Bradley are both very into crafts and projects. One day they combined forces (Clark's inventing with Bradley's engineering--their description, not mine) and came up with this pretty awesome robot costume out of random things they found around the house. 

Tearing . . . out all of the aspens. Remember last fall when Mike painstakingly drilled holes in all 80+ aspen trees and filled them with poison? Yeah . . . didn't even phase them. This spring, they were covered in buds and all of their branches were still green and pliable. So he moved onto Plan B: dig them all up by hand. Luckily, he found some willing helpers in all of the young men and leaders from our ward. They came over on a weeknight and pulled out every single aspen in under an hour and a half. It was actually kind of awesome to watch. One moment there were more than eighty trees in our front yard, and the next moment they were gone. I was a little concerned about some of the younger boys hacking away at tree trunks with hatchets, but fortunately there were not any injuries. Now we'll see what the aspens have next up their sleeves . . . because I'm sure we're not done with them yet. 

Getting . . . in a quick birthday celebration. Mike's birthday was the day before Aaron's hospital admission, so we spent most of the day preparing for that. But he opened presents in the morning, and we sang to him over brownies and ice cream in the evening, so it still had a birthday feel in spite of our distraction. We had The Pie for dinner, partly for Mike, partly for Aaron (who was about to start his low microbial diet once again . . . ugh). Mike has a big birthday next year (40!), so hopefully life will have calmed down enough to do something really exciting. 

Saying . . . goodbye. Mike's grandma passed away on the same day as his birthday. Although she was almost 93, it was unexpected. She was an amazing woman who had the gift of making everyone feel welcomed and so loved. Her funeral was during Aaron's transplant, but Mike was still able to take the other four boys down to Monticello for it, and I was able to watch it virtually. Clark was especially fascinated by the casket, and he regretted that I wasn't there to see it. It had been a long time since our kids had been around so many cousins at once, so it was actually a weekend that was filled with many happy moments for them, which I think Grandma Great would have liked.  

Giving . . . up his binky. We finally did it. After months of (unsuccessfully) trying to slowly wean Ian off of his binky, we went cold turkey a couple of nights before his fourth birthday. I was seriously worried about how it would all go down, but we gave him plenty of warning that it was going to happen. He was down to only two binkies, and they were on the verge of breaking, so he threw them in the trash, and then Mike took him to the toy store to find a couple of stuffies to take the place of the binkies. He found a penguin and a chick, which he promptly named Waddles and Peck. He fondly refers to them as his "little ones." I was expecting a couple of rough nights, but he never asked for his binky once. Maybe we waited so long that we reached an age where he had some sense and understanding. Either way, the binky is gone for good, and that felt like the last remaining vestige of his babyhood, so I'm a little sad (but not really). 

Turning . . . four years old. Ian had a birthday this month, too, and this one came while Aaron was in the hospital, which made it a bit tricky. We had planned to have Mike come home for an hour or so to sing and have cake, but when the time came, Aaron was just not able to be left. So we included Aaron and Mike over FaceTime, putting the candles on a cake that Mike had made two days before (what a dad!). I was worried that Ian would feel slighted, but he didn't at all. His brothers were very generous with him, Mike's mom came over to take him out for the morning, and Mike's sister stole him away in the afternoon to buy him a present. To be honest, he was quite spoiled. (And, at four years old, he seems to love Legos as much as Aaron and can follow the instructions like a pro.) 

Teaching . . . a craft class during recess. Apparently, Bradley took it upon himself to share the art of boondoggle with anyone who wanted to learn. It started with just a couple of friends at recess but morphed into a full-blown class. He purchased extra supplies with his own money and posted photos of all of the color choices on the class discussion board. He had signup slots so that he could give everyone the attention he/she needed. This is Bradley to a T: the organization, the inclusiveness, the willingness to share. He's been doing this since preschool when he gathered all of the other kids around him and read aloud to them. 

Getting . . . doses #1 and #2 of the Covid-19 vaccine. Mike and I are both done, and it feels so good. We spaced apart our shots by a couple of days since we knew one of us would always need to be with Aaron, and also just in case either of us had a reaction. But we both breezed through without any real side effects. I got a headache about 36 hours after my second dose, but I have no idea if that was related to the vaccine or just a normal headache from lack of sleep. I was quite nervous before both of shots because I've had reactions to vaccines in the past (and I even had a good friend and my mother-in-law drive me to and from the clinic just in case anything weird happened), so it was such a relief to feel totally normal and fine after each one. (We both got Pfizer, in case you're curious.) This vaccine feels like a gift to me--so grateful that it is paving the way for a return to normalcy and looking forward to making up for lost time with family and friends.

Doing . . . some "pet therapy." I am not a pet person at all, so I feel like my kids are lucky to have a cat, but they are still always wanting more. Luckily, we have friends and family who are willing to share their pets with them. They held bunnies at their friends' house and chicks at their cousins' house and then wished they could take both of them home. 

Misplacing . . . our mailbox. One morning, we looked out our front window and noticed our mailbox was tipping at a precarious angle. There was an orange traffic cone sitting next to it. When we moved into our house a year ago, I suspected that our mailbox would be a target for punk teenagers. It was just in the perfect location and was made out of the right materials. Mike propped it back up, and we went about our lives. A couple of weeks later, more traffic cones appeared, and our mailbox looked sad and pathetic. We guessed that the cones were being used to try to knock over the mailboxes. Such a fun game, I'm sure. Again, Mike righted the mailbox, although it was getting a little dented. But then a few mornings later, the mailbox disappeared completely, kidnapped in the night. This took place while Aaron was in the hospital, so we were really very annoyed since our mail couldn't be delivered and we had to purchase a new mailbox. It was just a big hassle, and the timing was not great. 

Watching . . . Maxwell''s fifth-grade play. His class had to miss out on a lot of things this year due to Covid, but thankfully, this wasn't one of them. His teacher's historical plays are legend because they are always so well done. She has a special way of being able to draw out the strengths of each child, and it is truly spectacular to watch. Max was Paul Revere and, later in the play, Voter #2, and, in my unbiased opinion, he stole the show. He agonized over this play every day for a week leading up to it--he takes after me and likes to stress about everything--so I was glad that it all went so well. It was something he was very proud of. 

Feeling . . . the love on Mother's Day. It was definitely different than most years since I was at the hospital with Aaron. But Mike still made me dinner, and I ate it outside on a bench. The boys made me cards and gave me presents. Even Aaron had made me something using supplies at the hospital, which I thought was really sweet. I would have rather been with all of my boys together, but I'm still glad they're mine.

Working . . . on a number of home projects. We had several things we were planning to do this spring, but when Aaron got sick, we had to put them on pause. We knew from his first transplant that we wouldn't be allowed to do any type of construction for at least the first six months following his transplant since dust or spores could cause bad things to happen in his lungs. So we took the only window we had--the month he was in the hospital--and ran with it. The timing was less than ideal with Mike and me single parenting at home and tag teaming at the hospital, but we hired out most of it and got it done. We had canned lighting installed in both the living room and basement. And our living room fireplace got a total makeover, which was something we'd been wanting to do since we moved in. Besides that, Mike rearranged the family room and built a large console of shelves to accommodate the TV and all of Aaron's Lego sets. And we've been slowly making small improvements to the yard.

Attending . . . Primary for the first time ever! Our ward brought back the second hour of church (i.e., Sunday School, Elder's Quorum, Relief Society, etc.), which meant that my kids finally got to go to Primary again (unlike the other classes, there hasn't been a virtual option for Primary, so it had been over fourteen months since their last time). This meant that for Ian, it was his very first time going to Primary! He was thrilled to be a little Sunbeam, and he has just been soaking up all of the social interactions, singing, and learning. The other day he said, "Do you know what my favorite day of the week is? Sunday. All of the other days are my least favorite days."

Planting . . .  a garden. Maxwell had big ideas for a garden this year--mostly because he was hoping to attract some different insect varieties to our house (it's all about the bugs for him). This is our first time planting a garden at this house, and so we went pretty simple on the plants. I don't have very high hopes since we're only giving it half-hearted attention, but maybe we'll get something out of it. Clark was insistent on planting corn, but then he ended up criticizing me the whole time because I wasn't doing it like our neighbor, Tony, who can do no wrong in Clark's eyes.

Going . . . to a diabetes class. Although we still don't have all of the answers with Aaron and Type 1 diabetes, we are moving forward on this path. Mike and I went to a class about two weeks after Aaron was diagnosed. It was so helpful. This class used to be done as a big group with lots of other diabetes families participating all at one time. But ever since Covid, it has been done with just one set of parents and a nurse educator. The nurse that was assigned to us had worked in the cancer/transplant unit for five years before becoming a diabetes educator. This was such a blessing because she knew exactly the kind of world we're in right now and could speak our language. She was the perfect bridge between bone marrow transplant and diabetes. She also really advocated for Aaron to get a continuous blood glucose monitor sooner rather than later, which has been kind of life changing. I have felt so empowered as I learn and then do and then learn some more. 

Spoiling . . . our favorite Clarky Jo on his seventh birthday. Clark is always very specific with his expectations for his birthday and then very enthusiastic when they are fulfilled. For example, for the last month, he had been adding present suggestions to a list that he made me keep on my nightstand for easy reference. This list included a wide range of options, from very small and inexpensive to big and pricey. One of my favorite moments from the day was right after he woke up. I was still in bed, and I could hear him going through his birthday bucket that was by his bed. He exclaimed as he took out each item: "A bow tie! Wait, another bow tie?! And corn seeds! CORN SEEDS!!!!!" It was so cute. Our neighborhood pool's opening day coincided with his birthday, so of course we had to go. He also had his birthday cake all planned out and had even left a diagram of what it should look like on Mike's nightstand (a Lego minifigure). But then he went to the party store, and they had a set of space-themed candles, which he fell in love with, so he changed gears and went the space direction instead. All in all, I think the day was everything he hoped it would be (but all of the birthday attention was difficult for a certain four-year-old who had multiple tantrums throughout the day).

Pausing . . . my sewing projects.  I don't think I sewed a single stitch in April or most of May. Single-parenting life made it impossible, and that's okay. I was busy, and I didn't miss it very much. I did, however, do a lot of knitting, as you might expect with all of my hours sitting on a hospital couch. I made two baby cardigans to give away as gifts. And I also got really far in a sweater for myself. 

Modifying . . . school performances. The boys' teachers had to get creative with performances this year. Max's teacher was able to pull off the school play in person (see above), but Bradley's and Clark's teachers both did virtual productions instead. Bradley was Jim Henson in his class wax museum. And Clark was a wizard in his class opera. I missed the usual way of doing these things, which has always been a highlight during previous school years. But it was nice to keep the tradition alive and get a little taste of the real thing.

Enjoying . . . Memorial Day. The holiday actually felt pretty normal. We went to my parents' house for the morning where the kids played croquet and badminton. We made a stop at the cemetery to visit Alisa's grave. In the afternoon, the boys had a water fight at home. And then we ended the day with a family movie.

Whew! Combining two months' worth of activities into one post feels like a lot, even when we really aren't doing very much. Hope your summer is off to a great start!

There are No Guarantees

I had a funny conversation with one of the BMT doctors this week. We were talking about Aaron's diabetes diagnosis (which is something that continues to mystify everyone, but at this point, their best guess is that he was genetically predisposed to Type 1 diabetes, and the stress of the transplant triggered the onset of it). I said something like, "The one good thing about diabetes is that everyone knows about it! We have so many people to talk to and so many resources. It's the opposite of aplastic anemia, which no one has ever heard of." Dr. R. gave me a funny look and said, "Aplastic anemia isn't that rare. I see people with it pretty regularly." I exclaimed, "That's because you see literally every kid in this part of the country who has it!" 

As an informal poll, let me know if you've heard of Type 1 diabetes. I'm guessing at least 97% of you have. Now let me know if you'd ever heard of aplastic anemia before learning of Aaron. I'd put the percentage at less than 8%. Everyone has a diabetes story or connection. No one has an aplastic anemia one. 

But to our doctor, it's a well-known disease. This makes sense because he has a significant amount of interaction with it every week. That little exchange made me realize how much our own worlds are made up of the things we know. We have a difficult time imagining that someone could know so little about something that consumes so much of our time.

During this same conversation, I mentioned that I would be totally fine if they gave my number to any parents who wanted to talk to another family with this disease. When Aaron was first diagnosed, I begged the social worker to reach out to another family on our behalf so we could connect with someone else who was going through the same thing we were. She reluctantly agreed to ask one family if they'd be willing to talk to us, and this resulted in a treasured friendship that has been such an immense blessing. 

But when I mentioned my willingness to be this same kind of person to another family, our doctor just said, "Yeah, I guess we could see about that. I'm sure there's a Facebook group or something like that though." 

In contrast, the diabetes world is all about connection. Everyone knows someone who has it, and they are all happy to share their stories, tips, advice, and good vibes. Within the clinic, there is a social worker that comes to every appointment because they realize that mental health is such a vital part of managing diabetes. There are support groups and summer camps and tons of resources.

This past Friday, Mike and I went to a diabetes class. Aaron was supposed to come too, but he had spent seven hours at the hospital on Thursday for an appointment and blood transfusion, so we let him off the hook. The only people in this class were Mike and me and the diabetes educator, so it was very tailored to Aaron's specific situation. It was so helpful, and we came away feeling empowered to help Aaron manage and live with this. 

Meanwhile, on the bone marrow side, we are awaiting the results from Aaron's first chimerism, and I'm nervous. His counts continue to be very low. His neutrophils were 1500 on Thursday, which isn't bad, but I'm not sure how much I can trust it since he's been getting neupogen fairly regularly. I think we'll have a better idea this coming week of how well they're holding on their own since it will have been over a week since his last injection.

His platelets were at 22 on Monday and 15 on Thursday. I am so hopeful that they will have gone up instead of down when we check them again in a couple of days. (With his first transplant, his platelets were the first ones to come in, and they were already almost to 200 by this point.) 

His red blood cells are not doing much either. On Monday, his hemoglobin was 7.6. On Thursday, it was 7.5. Aaron was so exhausted he could barely walk across the room without needing to rest. So they decided to transfuse him rather than risk him going any lower.

Dr. R. assured me that a slow rebound of counts is totally normal, especially for kids with aplastic anemia. But I could tell he was not completely satisfied with the rate of progress so far, even though he adamantly denied feeling this way when I questioned him about it. So then I asked him, "Well then, when will you begin to be concerned?" And he said, "If the chimerism comes back and the neutrophils are not 100% donor, then I will be worried." 

So now I'm worried.

I guess I just want some kind of sign that things are all going to work out. I want evidence that the results of the transplant will be different this time. I want to take a peek into the future and know that all of these months and months of pain and struggle resulted in something good. I want the doctors to look at Aaron's labs and say something like, "Oh yes, see this number here. We never saw that with the first transplant. We've got it this time, so everything will be okay."

We believe that Aaron's bone marrow failed because he still had a small percentage of his own T-cells, and once he was no longer on the immunosuppressant, they woke up and wiped out his bone marrow. I have long said that if I don't see those T-cells become 100% donor, then I will never be able to trust that this might not happen again. But when I mentioned this to Dr. R., he burst my bubble by saying, "Aaron will always retain some of his T-cells. They will never be 100% Maxwell's. That's just the way it is." 

So I countered, "Then does he need to stay on the immunosuppressant his whole life?" Dr. R. said no--once the bone marrow is strong and active again, it can hold its own against any residual T-cells. 

But--and I don't think I should have needed to remind him of this--that's not what happened last time. I am terrified of these T-cells and their destructive powers.

Dr. R. must have heard the note of desperation in my voice as I asked these hard questions that have no answers. He said, "Amy, I wish I could guarantee that it would work this time, but I can't. There are no guarantees." 

And that is what I am struggling this week. There are no guarantees. Not with this transplant. Not with Aaron's health. Not with my other kids. Not with life. There are no guarantees. 

I've been listening to the book, Untamed, this week. It's a memoir by Glennon Doyle, and she wrote of how difficult it was to make the conscious choice to stop desensitizing herself through alcohol and binge eating and start feeling all parts of life, even the really hard ones. She said, "Surprisingly, now that the ache has transformed from idea to reality, I feel relatively steady. Dealing with a dropped shoe is less paralyzing, apparently, than waiting for that shoe to drop." 

When Aaron was first diagnosed, the shoe dropped, and we dealt with it. When he relapsed, the shoe dropped again, and we dealt with it. But now we're approaching the stage where we might not be dealing with it in a 24/7, survival kind of way anymore.

And because of that, I live in daily fear of the shoe dropping again. 

Even though I know that if it does drop, we can put our heads down and deal with it again.

But I don't want to deal with it again.

A couple of weeks ago, I was revisiting President Nelson's most recent conference address. He gave five suggestions for how to increase our faith. The third one of these was "act in faith." He asked this interesting question, "What would you do if you had more faith?" 

I have thought about this question dozens of times and come up with many different answers. But one day when I asked it of myself yet again, the answer that came back was bright and intense, a burning truth: I would submit.

If I truly had more faith, then I would submit to God's will. I would acknowledge that He hasn't left me alone in the past, and He won't leave me alone in the future. I would recognize that some of my favorite blessings have not been a result of my own desires but because He had a better plan. I would relinquish my insufficient attempts at control. I would stop agonizing over every little win or loss and view the big picture. I would trust Him enough to take a deep breath and place it all in His hands.

Submitting is not the same thing as giving up. Not even close. Rather, it is realizing that God is always at the helm and that the voyage will go a lot more smoothly if I don't try to rip the steering wheel out of His hands. 

I am an active participant. I complete every task, I ask questions, I make decisions, I work hard. But at the same time, I release myself from the pressure of fixing everything. I exercise hope and allow myself to feel peace even in the midst of uncertainty. I watch for the miracles because I have every assurance that they will come.

This is how to submit.

. . . Or, at least, that's what I've been telling myself.

Putting it into practice is another matter entirely. It's so hard, but I'm trying. With each little disappointment, I remind myself to let it go and see what God can do with it.

Maybe Dr. R. was wrong. Maybe there actually is one guarantee. And maybe it has everything to do with giving the control back to God.  

The Long Haul

I don't know how frequently I'll be posting updates on Aaron now that he's home from the hospital and we're settling into the long haul that is "post-transplant." I actually hope that there won't be too much to report on because that will mean that things are going well.

In talking to people over the last week, I know there are some misconceptions about Aaron's recovery, particularly with the timing of it all. We don't expect anyone to fully understand what is required following a bone marrow transplant, so we are never bothered if we need to answer questions--we are mostly so grateful that people are interested in him and care about how he's doing.

But I thought it might be helpful to map out and explain some significant milestones in the process:

April 23, 2021: Bone marrow birthday

May 13, 2021: Engraftment

August 1, 2021: Day +100

October 23, 2021: Tapering of tacro begins

January 23, 2022: No more tacro

April 23, 2022: One-year anniversary

Aaron is on a drug called tacrolimus, which I've written about many times before. This drug suppresses his immune system (specifically the T-cells), which helps prevent graft rejection. The goal is to keep the donor (Maxwell's) cells from attacking the recipient (Aaron's) cells. 

Sometimes, even being on an immunosuppressive drug, this can still happen, leading to a host of problems (some short-lived and mild, others severe and long-lasting) known collectively as Graft-versus-host-disease (GVHD).

Our job right now is to keep Aaron as healthy as possible so that his body can work on growing these new cells instead of attempting to fight an infection or illness with a weakened immune system. He is on a low-microbial diet (no restaurant food, soda machines, raw fruits or vegetables that cannot be easily washed, communal bags or jars, etc.). The house must be kept extra clean. He can't work in the garden or be next to a campfire. We can't do any type of home construction/remodeling. He can't be in the same room if someone is dusting or vacuuming. And of course, the most obvious one: no sick people in the house. 

This is a balancing act because we have other children besides just Aaron. We must keep Aaron home and sheltered (except for exciting appointments at the hospital), but the rest of our kids need to still go about their lives to a certain extent. This comes with risk because they could easily bring something home, but we are trying to be as careful as possible. We are carrying on with some of our activities (school, church, small playdates) and avoiding others (family vacations, big parties, tons of extracurricular activities). 

Even though it seems like we're saying no to a lot of things, we actually feel quite fortunate because we're able to be home. Primary Children's takes care of kids from all of the mountain west states. Following a bone marrow transplant, you have to live no more than an hour's drive away from the hospital for the first 100 days. This means that many families have to find other accommodations for another two to three months after being discharged from the hospital. 

The road after transplant is a precarious one. When people ask how Aaron is doing, Mike likes to say, "It's like we're walking on the edge of a cliff." Things are going fine right now, but they could turn quickly and with very little warning, which is why close proximity to the hospital is essential.

100 days post-transplant is significant because several things usually happen: you get to say good-bye to the low-microbial diet; your central line gets removed; you are past the most vulnerable time with GVHD; and you get to start coming off of the immunosuppressive drug . . . or maybe not.

It is my understanding that patients who have leukemia start being weaned off of the immunosuppressive drug around 100 days. I think this is because they need the immune system to start working again as soon as possible to continue to fight the cancer cells. 

But with a non-malignant disease like Aaron's, it is actually better to keep his immune system suppressed for longer to give the bone marrow a chance to become strong and fully-functioning before allowing the T-cells to wake up. Last time they waited until he was six months post-transplant before beginning to take him off of tacro. I have not specifically talked to his doctors about this, but I am assuming it will be the same this time.

I realize I just gave you a lot of boring information, but hopefully it provided a clearer picture of the next few months and explained why Aaron can't resume all of his normal activities even though he has already had the transplant.

The other thing I thought I'd talk about is what our daily schedule looks like. This might be more for me than for you since I hope to be able to look back at it in a few months and see some progress:

8:30 am: Aaron wakes up (or gets woken up by me).

8:35 am: Check blood glucose. Give insulin if needed. Eat breakfast. Count carbs. Record all numbers on spreadsheet.

9:00 am: Take tacrolimus and other meds.

9:05 am: Flush and heparin lock central line.

9:00 am - 12:00 pm: If it is Monday or Thursday, go to hospital for appointment. Get transfusions and/or neupogen if needed. If it is Tuesday, see the home health nurse for a dressing and clave change on his central line. If it is Wednesday or Friday, stay home and try to convince him to do schoolwork.

12:00 pm: Lunch time--do all of the same things we did before breakfast.

2:00 pm: Take mycophenolate (another immunosuppressive drug that he has to take three times a day; he will only be on this one until Day +35).

2:00-4:00 pm: He has usually maxed out on school by this point and reads, watches a show, or builds a Lego set.

4:00 pm: The other boys get home from school. They immediately wash their hands and change their clothes to minimize germs.

5:00 pm: Dinner. Repeat all of the glucose/insulin/carbs steps from above.

7:00 pm: Start magnesium infusion. He gets this every night through his central line. It runs for two hours.

8:00 pm: Start micafungen infusion. This is an anti-fungal medication. He gets it every night through his central line. It runs for an hour. Because he has a double lumen, he can get both this and the magnesium at the same time.

9:00 pm: Take tacro and other medications.

9:05 pm: Flush and heparin lock central line.

9:15 pm: Give him long-acting insulin

10:00 pm: Do one last glucose check. Give insulin if needed.

10:30 pm: Go to bed.

These are the things that stay fairly consistent every day. There are variations (although not too many since we're not really doing anything) in the in-between hours.

So far, we haven't seen too much action with his blood counts. His neutrophils are going a little crazy (1700 on Monday, 600 on Thursday, 3500 on Friday), but that's because he's been on and off and on neupogen, so I feel like I can't really trust them yet. He needed platelet transfusions on both Monday and Friday. He didn't need a blood transfusion this week--his hemoglobin didn't go up but managed to stay fairly steady. 

We had a little bit of drama with his tacro level this week. At each appointment, they check to make sure it's in the range they want (which I think is between 8 ng/mL and 12 ng/mL). When Aaron was discharged last Friday, his tacro level was 16.5, so they told us to skip his night dose and then lower his dose by 0.3 mg. They suspected his central line might have become contaminated, and so they order a peripheral blood draw at his appointment on Monday.

Sure enough, the peripheral draw indicated that his tacro level was less than 2 ng/mL (which meant that the labs from his line had been artificially high), so they immediately increased his dose. I was pretty frustrated by this for a number of reasons: While Aaron as in the hospital and getting tacro through his central line, Mike and I were absolutely militant about checking to make sure it got put into his purple lumen only so that the red lumen could stay clean for blood draws. Somehow the red side got contaminated, and I know for certain this wasn't caused by tacro being put into it. So there has to be another way that tacro can cross over to the red side (maybe through back flow or checking for blood return, although they say they've seen lines get contaminated even after switching to oral tacro). 

This feels like something that would be worth figuring out since it can lead to dangerous situations, as in Aaron's case: They thought his tacro level was high, but when they did the peripheral check, they found out it was actually extremely low. Personally, I feel like they should have done a peripheral check much earlier, even before his level was "high," just to make sure it was matching with the draw from his line. This seems like it should be standard practice, but when I mentioned it to the doctors, they said, "We don't want to subject him to a poke unless it's absolutely necessary," which strikes me as extremely ridiculous since they have no problem drawing more and more labs at any other time. But for some reason, an extra poke seems like a worse tradeoff than GVHD. It makes no sense to me.  

I think one of the hardest things in all of this is watching everyone else come out of the pandemic and quarantine. The masks and restrictions are going away and normal life is being resumed, but not for us. We went into this quarantine state in August 2019. In March 2020, Aaron started coming off of tacro and we were just about ready to reemerge when the pandemic shut everything down. Now the pandemic is coming to a close (hopefully), but we are at the beginning of another transplant. It all just feels never-ending and like we will never get to go places or do things without masks or a sense of caution. 

But enough of all of that. This post has become much longer than I anticipated. I wasn't planning on sharing so many details, but now that they're there, I guess I'll leave them so I'll have them for future reference. 

The truth is that in spite of all of the appointments and blood tests and daily care, we're enjoying life at home so much. It's so nice to be able to go on a date with Mike or eat dinner together as a family or go on a walk around the neighborhood. There are many restrictions, but we still feel free.