Frequently Asked Questions

I spent yesterday afternoon doing some selfish sewing. It was a cold, slow day, and it felt nice to get lost in the creative process. But when I was done, I told Mike, "I probably should have spent my time writing a blog post instead." "Why?" he countered. "There isn't anything going on."

That's kind of true. It has been a slow week. We are in a holding pattern for now as we wait for tests and decisions and hopefully a few more answers. One of the blessings of this not being a malignant disease is that we don't have to rush into a transplant. We can take the time to check off each box and leave no stone unturned. That said, it isn't something that we can put off indefinitely as Aaron is in an extremely vulnerable and fragile state. We, along with Aaron's team of doctors, are not sitting around twiddling our thumbs. We're using the time we have to do as much as we can as we march ever closer to what feels inevitable.

I thought maybe the most helpful thing I could do today is just answer some of the questions I get asked the most. We are grateful for the interest you've all taken in Aaron's health, and I am happy to be open about anything I know the answer to (which, to be honest, often feels like not much). If I've skipped over something you've wondered about, feel free to leave a comment or send me a text.

When is the transplant going to take place? 

We don't have a fixed date yet. When we originally found out that Aaron's bone marrow was failing again, the doctors estimated that they would do another transplant in three weeks. However, at Aaron's appointment this week, they pushed that estimate back to the end of March. There are a number of reasons for this: They started weaning Aaron off steroids last week, but he won't be completely off of them until March 25th. They could do the transplant while he is still on them, but they would prefer not to, so they're going to wait. In addition to that, they decided to finish out his doses of rituximab. He got four total, the final one happening this past Thursday. Between the immunoglobulin, steroids, and rituximab, the doctors want to wait a couple of weeks and give them a chance to make a positive impact on Aaron's bone marrow. Personally, I appreciate them moving forward judiciously and with great care. I am still praying every day for a miracle.

Are you looking for another donor?

Interestingly, this seems to be the number one question that people have, and I think it all stems from one (very short) reference I made to the possibility of another donor in an earlier post. But as of right now, Maxwell is still the foremost candidate (much to his disappointment). It's easy to assume that since the transplant failed, there must have been something wrong with Max's cells or something that made him incompatible with Aaron. However, none of the evidence points to this. Rather, we saw blood counts that were very consistent for a year, no symptoms of Graft-Versus-Host-Disease (GVHD), and reassuring chimersims. It appears that it was Aaron's residual T-cells (not Max's) that wiped out his bone marrow a second time. Our doctors said it wouldn't hurt to look at the bone marrow registry and see if Aaron has another perfect match, but this poses its own set of risks and problems. Even when the HLA-alleles match between unrelated donor and recipient, the DNA material between these alleles will not match as well as it will between siblings. (This is my rather-primitive understanding.) Because the biggest risk with a transplant involves GVHD, they want the new stem cells to look as much like the old cells as possible--something that is much more likely with a matched sibling (as we can attest to from our first experience). The other thing that must be considered is the age of the donor. At almost 11 years old, Maxwell is pretty much the perfect age to be a donor. If we use someone from the registry, they will be an adult. The health of cells gradually decreases with age. If we use Maxwell, we will be putting the healthiest, most vibrant cells possible into Aaron. (Maxwell had a full workup this past week to check for any viruses or other issues that could make him incompatible. We don't have these results back yet.) 

But then, what about the mismatched blood type?

This is what everyone is getting hung up on. Aaron's blood type is A+, Maxwell's blood type is B+. After transplant, Aaron's blood type was supposed to change to B+, but as far as we know, it never did. It can take four months following transplant for it to change, and the last time Aaron got a type and screen (before these most recent ones) was only two months post-transplant. So there's a chance that his blood type actually did change, but then changed back when everything started to fall apart. (Can you imagine how insightful it would be if we had a type and screen from six months ago???) Even if this is what happened, it still leaves a lot of unanswered questions regarding the percentages in his chimerism. How can someone be 100% donor with their red blood cells but not be the donor's blood type? While there is a very slight possibility that the blood type is somehow a clue into the failed transplant, it still seems like using Max for the donor is the safest, smartest choice.

Have you found out anything else from the bone marrow biopsy? 

We finally got the full chimerism report from the bone marrow biopsy. The doctors were most interested in what happened with CD-33 (the antigens on the myeloid cells). In November, the chimerism report showed that three of the five CD-33 markers were 100% donor whereas the other two markers still showed trace amounts of recipient cells. In January, the chimerism report said the CD-33 was 100% donor, which made us all breathe a (premature and false) sigh of relief. The bone marrow biopsy showed that the CD-33 is now 94% donor. The fact that it is dropping is not a good sign and also confirms everything else we've already been learning.

Will you get a second opinion?

We trust Aaron's doctors a great deal and have the highest respect for them. That said, we also think there is value in other perspectives and opinions. We are going to consult with a couple of other bone marrow transplant centers to see if there is anything more that would be helpful to his case. Aaron's doctors are fully supportive of this.  

How often is Aaron at the hospital? 

Aaron has been going to the hospital twice a week: Mondays, just to draw labs, and Thursdays, for labs and an appointment. If he needs a transfusion, these theoretically short visits can stretch to many hours. 

Is Aaron getting any transfusions?

Yes. I mentioned before that his doctors were trying to hold off on transfusions if at all possible, but this past week, it became necessary for Aaron to have both a platelets transfusion (on Tuesday) and a blood transfusion (on Thursday). His platelets have been hovering right around 3 for the past couple of weeks, and he seemed to be doing okay, but then his nose started to bleed a little bit every time he ate. Mike and I were so nervous that we started setting alarms throughout the night to go check on him. Then on Tuesday, Aaron's gums started to bleed. We felt like there were too many red flags, and the team agreed, so he got a transfusion. They didn't draw labs immediately after the transfusion, so we don't know how high his platelets went, but at his appointment two days later, they were at 43, so we took this as a very positive sign that he wasn't killing them off right away. On Thursday, they decided to also give him two units of blood. His hemoglobin was at 7.2, and they didn't want him to drop below 7 over the weekend. Between the rituximab and transfusion on Thursday, Mike and Aaron were at the hospital for eight hours, but it was nice to see Aaron with some color in his cheeks again and a little more energy.

How is Aaron feeling?

His energy is generally pretty low. He spends a lot of time on the couch or in bed. It's hard to say if this is because of his low hemoglobin or because we've restricted a lot of his activities due to his low platelets. I'm often energized when I get up and move my body, and he's not doing a lot of that right now, which I think only exacerbates the fatigue. But really, the thing that is hardest for him right now is that his mouth is full of sores. This happened to him during his first diagnosis as well. Because his body can't really fight infection (due to a low white blood count and no neutrophils), any little bump or cut in his mouth turns into a full-fledged sore. This is agonizing for him. And since food is one of the main sources of pleasure for him these days, it is a real downer that eating is now causing him so much pain. 

How is Aaron's mood?

You might notice that I talk about my emotions a lot in these blog posts, but usually say very little about Aaron's. This is because I am the one writing the posts. I can speak to my own mental health but don't feel like it's necessarily fair or right of me to try to represent him. What I will say is that it's complicated. There is a vast difference between an 11-year-old (when he was first diagnosed) and a 12.5-year-old (currently). This is a really volatile age in general, and probably even more so when you're going through a medical crisis (and on medication that causes mood swings). Our even-tempered, easy-going Aaron is not quite so even-tempered or easy-going at the moment. I don't blame him one bit. 

What do you need? 

At this moment, mostly just prayers, positive thoughts, and lots of hope. Because Mike enjoys cooking, and Aaron loves his dad's food more than anything, we actually prefer to just do our own thing when we can. That certainly might change with a long hospital stay, but we are good for now.  

This is a rare disease with some complex variables, and there are so many answers I wish we had but don't. Hopefully your questions have been answered, but if not, please ask, and I'll do my best to answer them or (more likely) say, "I don't know." 

Serendipity and the BYU Basketball Team

As we neared the end of our Arizona trip last month, we drove from Phoenix to St. George on Sunday. Since Sunday is religious, sacred day for us, we wanted to do things that would help us worship, even while we were in our car. Mike downloaded several religious podcast episodes, including an interview with Mark and Lee Anne Pope (the head coach for the BYU basketball team). The interview aired more than eighteen months ago, but Mike knew it would be of interest to our kids since it involved BYU basketball.

We ended up loving the episode. Mark and Lee Anne Pope were so fun and genuine and inspiring. Little did we know that in just a couple short weeks, we would be meeting them in person . . . 

But before I get into that, let me say that I know it can be hard when you're wondering how someone is doing and you don't want to bother them but it's also been awhile since there has been any kind of update so you're worrying what that might mean. I can totally empathize with that feeling. It's one of the reasons why I try to be fairly consistent with sharing the latest. But it's been several days, and I'm sorry if that has caused anyone concern.

For us right now, a lack of updates just means that very little has been happening. It takes time to put a plan into place, and so we're just trying to hang tight while things come together. 

This is not without its worries. Because of Aaron's fragile state, Mike and I both feel like we are on high alert all the time, which is very exhausting. For example, yesterday Mike was at the grocery store. When he got home, Clark met him in the garage: "Dad! Dad! Come inside quick! Aaron . . . " [Mike's heart started to race as he rushed inside] " . . . Aaron got a huge box of stuff from his friends" [Long exhale]. 

Aaron had an appointment on Thursday. His platelets were at 3, but the doctors still wanted to hold off transfusing him because of his antibodies. When he was diagnosed the first time, he received regular platelet transfusions (anytime he dipped below 10). This gave us periods of reprieve when we could breathe a little easier before they dropped down again. But this time, we never get that because they're not going to transfuse him unless he starts to bleed.

When he was at his appointment, Mike asked the doctor, "Is there a number where his platelets are so low that it becomes dangerous to not have a transfusion?" "Oh, he's already there," his doctor answered, which was not the least bit reassuring and confirmed all of the anxiety we've already been feeling. 

In the midst of all of this though, we had an unforgettable experience this past Monday. 

When Aaron was in the hospital, the child life specialist came by one day with an offer from the BYU basketball team. They wanted to invite a family to one of their home games, and she thought Aaron would be the perfect candidate since she knows what an absolute die-hard fan he is.

Somehow, miraculously, the BMT team gave their okay on this. They've banned pretty much every other activity, but maybe they realized how much Aaron's soul needed this. 

The way the whole night came together was something of a miracle as well. We were originally supposed to go to a game at the end of February, but then the Gonzaga game came up, and they asked if we could go to that one instead. At that point, Aaron was still in the hospital and things were up in the air, but we said we'd try.

Aaron met the entire team on a zoom call a few days before the game. He has always been a fairly quiet kid, but this was accentuated by also being slightly starstruck. I don't know if the team came away from that conversation knowing how excited Aaron truly was.

We looked forward to it all weekend. It was like this little bright spot on the horizon. Then on Monday, I took Aaron to the hospital for labs. The results were not good: Platelets were at 2, white blood count was at 0.7 (with neutrophils coming in at a whopping zero), and hemoglobin was also falling. As I already mentioned, they didn't want to transfuse Aaron, but with counts so extremely low, I didn't know how we could risk a trip to Provo where we'd definitely be around other people and it would be a very late night (the game didn't even start until 9:00). But again, the doctors said to go ahead. So we did.

We left Clark and Ian with Mike's parents, and the rest of us went to the game. Being back on campus always floods me with happy memories. Not being much of a sports fan, I went to (maybe) one basketball game during my entire four years (I honestly can't remember), but between devotionals, performances, and graduations, I actually spent a lot of time going to other things in the Marriott Center. 

We arrived an hour before the game and were met by the executive assistant, Natalie. The first thing she handed to Aaron was a signed basketball from the team. We got our VIP passes for the game, and then she gave us a private tour of the annex. We walked through the gym, snack bar, conference rooms, game room, and Coach Pope's office. In one of the rooms, there was a life size poster of Matt Haarms stretched out on the table. Natalie rolled it up and handed it to Aaron. 

Then we went to the practice court where the boys shot some baskets. Aaron was not at the top of his game for obvious reasons and repeatedly missed his shots. Then Bradley stepped up to the free throw line and sunk it on the first time. To be honest, having Aaron jump around and be a target for bouncing balls was a little too nerve-racking for Mike and me, so we called it quits before it went on for too long.

Natalie took us through the tunnel to the arena. We emerged on the floor, and she showed us to our seats. They allowed 200 spectators for the Gonzaga game, but each group of people was separated by many rows and seats, so we felt like we were in our own little bubble. 

On our row, we found more surprises: individual treat bags as well as a big bag filled with all sorts of swag--shirts, masks, hand sanitizer, BYU fudge and mint truffles, and lots of paraphernalia for cheering. 

About ten minutes before the game started, Aaron touched my arm and said, "Look, Mom!" I looked up at the jumbotron and saw a video that Mike put together many years ago when Aaron was just a baby. He spliced together clips of Aaron to go along with the BYU fight song. I guess Mike's dad sent it into them when he heard that we were going to the game. I'm sure everyone else in the arena wondered why this random home video was being shown, but it was pretty special for us.

Coach Pope's wife, Lee Anne, came over before the game started. I kind of already felt like I knew her since we had listened to the podcast episode a couple of weeks before. She was just as nice in person as she had seemed in the interview.

Finally it was time for the thing Aaron was most excited for: the actual game. Gonzaga is the #1 college team in the nation right now, so we didn't have high hopes for BYU to pull out a win. They played well though, but Gonzaga got a ten-point lead in the first three minutes, and BYU could never catch them after that. 

At half time, Cosmo and two cheerleaders brought over cougar tails (long maple doughnuts). Aaron wasted no time diving into his (#steroidappetite). Since the game was broadcast on ESPN, several people texted us pictures of us on camera, which was kind of fun. 

By the time the game ended, it was after 11:00 pm, and I was feeling it. But Natalie said we could come down to the floor, and if we wanted to wait around for a little bit, we could meet Coach Pope and the team. We knew this was the only time we were ever going to get this chance, so we waited.

Coach Pope came out with BYU's president and vice president. He elbow-tapped Aaron and then asked, "Well, Aaron what did you think of the game?" Aaron answered candidly, "I don't know if this is a compliment, but I actually thought it was going to be worse." Coach Pope was so friendly and immediately put Aaron at ease. Then he asked, "Do you guys want to come back to the locker room and meet the team?"

If Aaron was starstruck before, it was nothing to what he was once he was in the locker room surrounded by the team. Coach Pope whispered to Aaron, "Who did you enjoy watching the most tonight?" Aaron looked around the room and I could tell he was having a hard time choosing just one, but eventually he said, "Trevin Knell." Coach Pope immediately called Knell over, and we got the full story for a nickname of his that we had noticed on one of the whiteboards in the annex.

We were just about ready to leave when Coach Pope said, "There's just one thing I would change about your family." He pointed to the boys' shoes. "You're all wearing Under Armor, and we only wear Nikes, so you give me your shoe sizes, and we're going to send you some Nikes instead. Is that okay?"

As we left the Marriott Center, we were all flying so high. I know you didn't need a minute-by-minute recap of our evening, but this is something our family will remember forever, and I wanted to have a place where it was recorded. 

For a boy who loves BYU with all of his heart and soul, this was the experience of a lifetime. He met some of his heroes, was given the royal treatment, and got to do some things he'd only ever dreamed of. It's kind of hard for me to reconcile it in my head because I can't deny that this is something he will remember for the rest of his life. He will look back on it with great fondness and happiness. And yet, he would never have had it if he hadn't been sick,  There's the rub. As nice as this experience was, we would have let it go in a heartbeat if it meant Aaron was healthy. 

Sometimes I get weighed down by thinking of all that Aaron is missing. This week we met with all of his teachers to figure out a plan for the rest of the year. They were so kind and accommodating, but tears just streamed down my cheeks when we got to Aaron's band teacher. Playing his trombone with the jazz band is one of his great loves, and it hurts to see him stripped of this joy for a time.

Although this experience at BYU couldn't make the bad things go away, it eased the pain of them for a moment. The transplant road is a long one, but it will not be without its joyful moments. We learned that last time, and this experience proved that it will be true once again. So we will take each spark and glimmer and sunburst and treasure them. They are paving the way to an even brighter future.

A Little of This and That in January

As you already know, the end of January was a real downer. But before that, I would have said January 2021 was one of the best Januarys I'd ever had (and I'm hard to please in January). That's the way life is: there are highs and lows, and this January had both, including . . . 

Donating . . . blood. Ever since Aaron's need for frequent blood and platelet transfusions (both before and currently), I have wanted to donate blood more regularly. I did it once (for my first time) over a year ago and intended to continue with it. But with the onset of covid, I became nervous once again. They ask you a million screening questions before you donate, and I knew that process would only be intensified with the added concern about covid transmission. So I just didn't pursue it. But at the start of the beginning of the year, I decided that it was something I really wanted to do. And then ARUP blood services called, and they can be very persuasive, so I made an appointment. Having someone poke me with a needle and take some of my blood will probably never be my favorite activity, but it really wasn't at all bad this time around, and I think I'll try to do it again in a couple of months.

Knitting . . . with my sister. I gave her a little kit for a beaded bracelet for Christmas, and I happened to find the same kind of kit in my stocking (wink, wink), so we decided to spend an afternoon working on them together. I've never used beads in my knitting before, so it was fun to learn something new.

Feeling . . . so spoiled on my birthday. I thought my birthday was falling on a Wednesday (my least favorite day of the week). But then a few days before, I realized it was actually on a Thursday (my favorite day of the week). That elevated my anticipation of it considerably. It's so nice to have a favorite day of the week (do you have one?), and that got my birthday started off right. (Interesting side note: Mike and I were married on a Thursday, but it was already my favorite day before that.) Mike kept me well-fed throughout the day: he picked up kouign-amann pastries for brunch and sushi for lunch; he made lemon-chicken pasta for dinner along with homemade sourdough bread. And he topped it all off with the most amazing chocolate cake I've ever had in my life. I indulged in my favorite hobbies in the afternoon without any feelings of guilt. And my kids gave me really thoughtful gifts and tried to minimize arguing and fighting. Many people sent me messages and well wishes, which made me feel special and remembered. I wish all of this didn't have to come with adding another year to my age, but I guess that's the way it goes.

Spending . . . a night away from home. Mike continued with the birthday festivities by taking me to the Grand America for a night. My sister came and stayed with the boys, and Mike and I soaked up the time together. Even though we've lived in Salt Lake for a long time, we had never stayed at the Grand America. It is gorgeous and rich in history, and once we were there we said, "This feels like something we should have done a long time ago." We ate yummy food (highly recommend the lemon ricotta pancakes) and did the walking art tour through the hotel and lounged around watching shows (and the new Rebecca that came out last year--so good) and just generally had the most relaxing time. 

Buying . . . a truck. When Mike sold his truck in November 2019, I wrote, "I'd be surprised if he doesn't break down and buy another truck in a few months." I think the only reason he made it more than a year without one was because we bought a house last year, and a truck wasn't in the budget. Well, a new truck still isn't in the budget, but Mike found a 2006 Ford in great condition for a good price, so he snatched it up. I think he feels complete once more, and I'm happy because I always have a long list of projects for him to do, and now he has no excuses.

Ditching . . . the cold and gray for some Arizona (and St. George) warmth and sun. Making plans is a bit of a gamble in this pandemic world we live in, but we decided to take a chance and schedule a winter vacation. And I'm so glad we did (especially since our world kind of fell apart two days after we got back). Arizona holds a kind of magic for me in January. There is something about opening the van door and being embraced by what we think of as early-summer temperatures but in January--it never ceases to fill us all with wonder. Even when we were back in 20-degree Utah, it was nice to remember that there was a warm, sunny place just a day's drive away. And we really couldn't have asked for nicer weather while we were there--mid-70's every day.

Visiting . . . beloved friends. Arizona doesn't just have the sun going for it but is also home to some of our very favorite people on the planet. We spent two-and-a-half absolutely delightful days with all eight of them, and we left wishing yet again that our visits didn't have to be so spaced out. We went on adventures, played games, and ate good food. The adults even sneaked away for a little date night where we could actually talk in normal voices without the din of eleven children in the background. 

Eating . . . cold treats. We indulged in shakes and shaved ice while we were in Arizona and marveled that we were eating something frozen in January and that it not only didn't make us shiver but actually hit the spot.

Revisiting . . . old favorites. There were a few things we had to repeat from our Arizona trip three years ago, namely the Rooster Cogburn Ostrich Ranch (which lived up to our memory of it), Bahama Bucks shaved ice (tastier than we remembered), citrus picking (nothing beats an orange straight off of the tree), and a cold plunge into an unheated pool (I actually have no idea why my kids wanted to do this again). 

Seeing . . . new sights. While in Arizona, we hiked the Butcher Jones trail, played in Saguaro Lake, went to Fountain Hills to see one of the tallest fountains in the world, and walked around the Casa Grande ruins.  These were all activities that were very covid-friendly and that our kids loved. We really preferred being outside as much as possible. 

Walking . . . on an ancient lava flow. Utah never ceases to amaze me. On our return trip from Arizona, we did a few hikes in St. George. One of them was made up of black igneous rocks, which we climbed up and over. The rocks were pockmarked but smooth and cool to the touch. We meant to hike to the lava tubes, but we made a wrong turn, and by the time we realized it, we didn't have enough time left. Some of our kids were disappointed, but we told them it would give us something to look forward to when we go back.

Pretending . . . to be a bird. Ian has always had a very vibrant imagination. While he pretends to be many things (especially when Clark is orchestrating), his default is a little bird. He flies around the house and tells us what he wants for breakfast by saying, "Tweet, tweet." Sometimes he refuses to acknowledge us unless we lead into the conversation with a similar, "Tweet, tweet." Often he acts as interpreter for his alter ego: "Birdy says he wants a coloring page." Many times, he won't go to sleep until he has made himself a soft nest of blankets. 

Wearing . . .  one of my favorite finished objects ever. This month, I finished knitting a long ribbed cardigan with pockets. It fits me perfectly and is everything I wanted it to be. And that's a good thing because I did a ton of pattern research before deciding on this one. I will say that knitting 2x2 rib for the duration of a long cardigan is maybe not as wonderfully mindless as plain stockinette, but it's still knitting, which is pretty much always meditative and relaxing for me. This month I also knit a hat (twice, actually, because I didn't like the way it fit the first time) and a beaded bracelet (the one I mentioned above with my sister). And I sewed a mock turtleneck and a t-shirt. So it was a nice, productive month, creativity-wise.

Spending . . . a small fortune at Costco. It had been at least five months since Mike had been to Costco. I don't know the exact amount of time, but I know we've been buying grocery-sized instead of Costco-sized versions of some of our staples since school started. I had it in my head that we had saved all this money by avoiding Costco for so long, but Mike packed four trips' worth of food and supplies into one. And I made the mistake of going there with him. A normal Costco trip stresses me out, so imagine what this epic one did to me. We packed a regular cart and a flat bed cart as high as they would go. As we were checking out, the cashier looked at the mountains of food and said, "Will this last you a long time?" I simply answered, "We have five boys." "So . . . no," she concluded. My only regret is that I didn't take photographic evidence of our purchases.

Keeping . . . the air clean with lots of little snowstorms. We haven't had a good big snowstorm for the entire winter. However, every few days we get a little dusting of snow, which cleans the smog from the air, outlines the trees in white, and melts by the afternoon. Personally, it's kind of perfect for me. I love not having slushy, dirty snow for weeks on end.

Landing . . . back in the hospital after fifteen months of good health. Things took a scary and unexpected turn for Aaron. We thought he was totally in the clear, but apparently his bone marrow thought otherwise. I wrote more about what's going on here and here. 

Feeling . . . the love of family and friends. In the midst of this latest health crisis, our loved ones have rallied around us once again, and we're so grateful. In the interim between Aaron's first transplant and now, we moved neighborhoods, but this new one has proven no less kind, generous, or supportive. And our friends in our old neighborhood have not forgotten about us either. And of course both of our families are always ready to jump in with anything we need. I get emotional when I think about how lucky we are to be surrounded by so many good people. 

So that's where we're at right now. We're grateful for the good memories and looking forward to brighter days ahead.