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.

Paused for Processing

I was drafting a different blog post on Thursday afternoon. 

I was planning to break down what we knew about Aaron's condition--mostly that it had started as a single line problem affecting just his platelets but had morphed into a multi-line situation. I was going to explain all about the hemolysis (destruction) of Aaron's red blood cells and why that was keeping him in the hospital. I was wanting to tell you about how happy it made all of us to get our all-time favorite nurse for three days in a row. I was hoping to share the semi-good news that Aaron's counts seemed to be stabilizing. Mostly, I was planning to confidently share that all of the evidence seemed to point to this being an antibody, and not a transplant, problem. One of the strongest proofs for this was how suddenly Aaron's system collapsed. I was sure that if something was going on with his bone marrow that we would have had some warning in the months leading up to it: volatile counts, a worrisome chimerism, that sort of thing.

I was in the middle of writing all of this out when my phone rang. I saw that it was Mike, and I answered quite cheerfully, without any sense of impending bad news: "Hello?"

He didn't waste any time. "The team just came in with the results of the biopsy. It isn't good. His cellularity is less than five percent. His bone marrow is almost completely destroyed. He will have to have a second transplant."

The words were going in, but they were not registering. "What?" I kept saying. "What do you mean? This doesn't make any sense. I don't understand what you're saying." After all, I was in the middle of writing a blog post. I had it all figured out, you see, and this bomb did not have any place in the picture.

I have had bad days before, but that Thursday afternoon/evening is a top contender for sure. I should have been prepared for this kind of news. The doctors had mentioned several times that a second transplant was a possibility. But in my need to bring order and understanding to my life over the last two weeks, I guess I had kept the facts that made sense for the reality I was constructing in my mind and discarded the rest. 

Mike kept talking: "They're saying this a relapse of aplastic anemia. They gave me a medical paper that talks about cases like his with majority donor chimerism and occurring late after bone marrow transplantation. It's very rare, but it has happened before." 

The weight of his words finally caught up to my brain, and I stopped saying "what?" and started crying instead. I thought about the first transplant and what it would mean for all of us, but especially Aaron, to have to do it all over again. "It's just too much," I said.

The one good thing from Thursday was that they let Aaron come home. I couldn't bear for us to be apart in this moment when we just needed to hold each other and weep. Mike asked the nurse practitioner if it would be possible. They had already been planning on sending Aaron home the next day after one more round of Rituximab, but they said if Aaron was willing to come back into the clinic in the morning, then he could go home.

Being together has made all the difference. The boys have been so glad to have Aaron back. There is truly a gaping hole when he is not around. And Mike and I have had long conversations stretching into the night and resuming in the morning as we've tried to process and understand it all. 

When Mike and Aaron were back at the hospital yesterday, one of nurse practitioners said, "We wish we could hand you a package of answers, but it's a complex thing." From what we can gather, there are only a handful of cases like Aaron's that have occurred over the last decade.

Graft failure and a second transplant in and of themselves are not unheard of, but it's the way that Aaron's happened that is so rare. There are typically two ways for graft failure to occur: either the graft never fully takes or the recipient's cells gradually take over the donor cells. But neither of those is what they think happened in Aaron's case. He had a strong graft, majority donor chimerism, consistent numbers, good health, and more than a year since transplant.

A blood chimerism from two weeks ago showed that his whole blood was still 94% Maxwell's. We are still waiting for the chimerism from the biopsy to come back, but the doctors do not anticipate a change. So instead, it looks like the graft failed because Maxwell's cells also experienced aplasia (bone marrow failure). 

We don't know what caused this to happen. It's one of the many mysteries in this whole case. The T-cells have always been a bit of a wild card. While everything else in the blood was 100% donor cells, the T-cells have held onto a small percentage of Aaron's (the chimerism from two weeks ago showed that the T-cells were 87% Maxwell's--hence the 94% whole blood percentage mentioned above). The best guess at this point is that Aaron's (not Maxwell's) T-cells, which were probably the culprits in the first place, destroyed the bone marrow again. 

There maybe was a little hint that things were not as they should be a year ago. At that time, Aaron had a bone marrow biopsy, which found his cellularity to be around 20%. The doctors admitted that this was lower than they hoped to see but also not necessarily cause for concern. I wrote more about that conversation in this post, but the words "second transplant" were briefly whispered before being tucked away. 

There is one more piece of this puzzle that maybe puts Aaron in a class entirely by himself. Before transplant, Aaron's blood type was A+ and Maxwell's was B+. We had been told that following transplant, Aaron's blood type would change. But when he was getting a blood transfusion last week, I listened as the nurses read off his information, and they said, "Recipient is A+." I let them finish, and then I said, "Wait. Aaron is A+? He is supposed to be B+." I mentioned this to one of the doctors the next day, and it kind of stopped him in his tracks. He was as baffled and confused as I was . . . not exactly what you want your doctor to be.

In the days since then, the whole team has tried to find an explanation for this, but they have all drawn a blank. As far as we can tell, this has not been seen before. We have no idea if this has any bearing on what happened with Aaron's bone marrow or if it is just a random anomaly meant to throw us off the trail. 

When we got the disappointing results from the biopsy, the floodgates of our emotions opened (and when I say "our," I am mostly referring to mine. For better or worse, I haven't seen Aaron cry about this yet). It was difficult to think because the pain was suppressing everything else.

But the thing about bad news is once you have it, you start to deal with it, and that has certainly been true for us. We are still crying, but we are also thinking, researching, discussing, and planning. We have to move forward. That is the only way through it.

The problem is, the path is not totally clear yet. It is not as simple as, "Let's get that boy a transplant!" We have many things to consider, not the least of which is all of the serious complications that could arise from another transplant. We are looking into any other possibilities for treatments as well as thinking about the potential for a different donor from Maxwell should we move forward with a transplant. There is also a slight, but not impossible, chance that the drugs they've been using to stop all of the blood cell destruction could give the bone marrow space to start working again. We can't make any definite decisions until we get the chimerism back from the biopsy.

Our hope and optimism have definitely taken a hit through all of this. Feelings of despair and grief have threatened to overwhelm us. The words, "This is not fair" have been thought and spoken. But as I sit here writing this, my faith is struggling back to the surface. Two thoughts in particular have been an anchor to me during this time. The first is a verse from the Doctrine and Covenants: 

"I will go before your face. I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up" (D&C 84:88).

I have had the sweetest, most tender experiences as I have repeated this verse over and over again in my head. I will probably share more about these at a later time, but I strongly believe we have been surrounded by heavenly forces, probably in large part because of all of the prayers being offered up on Aaron's behalf.

The second is something that Elder Joseph B. Wirthlin said. Every time I think about all that Aaron has lost, and still stands to lose, from this illness, I feel such heartache and anger. He will never get these years back, and this is such a formative and critical time of life. It just hurts so much. But I am holding onto these words from Elder Wirthlin: 

"The Lord compensates the faithful for every loss. That which is taken away from those who love the Lord will be added unto them in His own way" (from Come What May, and Love it). 

I know that he was speaking in an eternal sense. This doesn't necessarily mean that Aaron's childhood and adolescence can somehow be given back to him. Every loss is not compensated in this mortality. But there is something very comforting in the belief that God sees this hardship and sacrifice, and it will not be for naught. The blessings will come--some now, others later. We can be certain of that. We are already seeing it.

One thing we will never get over is how kind and generous people are. We have such a strong support system of family and friends who don't abandon us when the going gets tough but rather rally around us. The thought of all of you bearing this with us brings quick tears to my eyes. We will never forget it. Thanks for sticking with us.

(Also, I know some of you who are reading this might not have known us when we went through it the first time (the fact that I am now using the words "first time" and "second time" makes me sad). I have written all about this experience in other posts, and those can be found here under the label "aplastic anemia.")