Frequently Asked Questions
Feb 21, 2021
Serendipity and the BYU Basketball Team
Feb 14, 2021
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
Feb 11, 2021
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).
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.