Ready, Set, Action

Apr 18, 2021

When we found out that Aaron's bone marrow was destroyed, his cellularity was functioning at less than five percent, and the transplant had failed, it felt like the most devastating news. Coming to terms with the reality of what this all meant for our family, and especially for Aaron, was hard. One by one, all of the things that we had regained after the first transplant got stripped away from us again. With each new loss, it felt like a punch in the gut.

But when Aaron and Mike left for the hospital on Friday, our spirits were high and the mood was celebratory. We were pumped. If you had told me three months ago that I could actually feel happy about the prospect of doing this all again, I might have answered with something very rude.

I can't stop thinking about this mind shift. The situation did not change. Aaron was not immediately healed. He was still staring down the long, dark tunnel of treatment and transplant. But somehow, time had softened the blow. We'd been given space to adjust our thinking and change our expectations, and what was once unbearable was now being borne. 

People have asked us if this is harder or easier because it is the second time, and the truth is, it's both. It's harder because we know that the process is long and slow (and we are acutely aware of the reality that even when things look good, they can still go horribly wrong). 

But it is also easier. We are so familiar and comfortable with this hospital. It is truly like a second home to us. When Aaron was admitted for the first transplant, we didn't know anyone--not even the doctors (Aaron had only just been switched over to the transplant team a couple of weeks before).

Now we know everyone. The security guards recognize us when we pull into the parking garage or check in at the front desk. We have favorite techs and nurses. The nurse practitioners have saved us at all hours of the day, or more often, night. The doctors know that when they come into Aaron's room, he will most likely be building a Lego set or eating a bowl of Reese's Puffs. 

On the Monday after spring break, Aaron was sympathizing with his brothers who had to go back to school. Bradley said, "I don't mind. I get to see my friends." Aaron replied, "Well, I get to go to the hospital to see my friends." We all laughed, but he wasn't exactly joking. 

So here we are, doing this thing we've done before. It's kind of sad that it feels so normal, but it's also nice.

It has been a very eventful few days. After months of being in a turbulent holding pattern, things took off this week, beginning with one of the biggest--the harvest of Maxwell's stem cells. 

I had the privilege of being the one to take him to the hospital, and, in spite of the early wake up time, it really was a privilege. If you've ever spent any prolonged time with Max, you know that there is never a dull moment. I kept firing off texts to Mike with funny things he was saying:

Nurse: Are you allergic to anything?
Max: Only things that everyone is allergic to, like poison ivy . . . or mosquitos. 
 
Nurse: We want to keep your pain between 0-3. Does that sound reasonable?
Max: Yes. [Pause] Actually, it sounds unreasonable. Like you're discriminating against the number 4. 

[As the nurse was putting hot packs on his hands, prior to inserting his IV]: "Isn't this so that my veins will bulge? It's like you're fattening up your victim." 

Nurse: Are you doing this for an older or younger brother?
Max: Older. It pays to earn the respect of your older brother.
[And finally, after it was all done, and he was getting ready to take off his hospital gown and get back into his regular clothes]: I still have no idea where my [hospital] pants went . . . 

It wasn't just me who was entertained. The anesthesiologist, nurse practitioner, doctor, and several nurses all commented on it as well. It sounded like he was in fine form just prior to the anesthesia kicking in. I think he actually took Dr. Boyer, who is used to Aaron's reserved personality but has had very little interaction with Max, by quite a bit of surprise. 

And can we just talk about the anesthesiologist for a minute? She saved the day. When Max did this the first time, the anesthesia was the worst part for him. He felt nauseous and lightheaded and, in his words, "woozy" for the entire day. Even by 8:00 that evening, he was still shaky and retching anytime he tried to get up. 

I know this is not an uncommon side effect of anesthesia, but I still mentioned it several times in the hours leading up to surgery. The anesthesiologist took it so seriously and said there were some things she could do to help reduce the chances of nausea. Although I don't know everything she changed, I do know that she used his IV instead of the mask to put him to sleep. After it was over and Max was back in the recovery room with me, she came in to check on him and even sent in a little container of gauze soaked in peppermint to help him on the drive home. I was so touched by her sincere thoughtfulness on his behalf. Like everyone else, she also mentioned his pleasant chattiness before the surgery and then just as she was leaving, she turned back and said, "You have a very nice son."

Whatever she did totally worked. Maxwell didn't have any trouble coming out of the anesthesia. He woke up gradually and easily. It could not have been more different from the first time. He progressed from Sprite to smoothie to goldfish to getting up to go to the bathroom to getting dressed to leaving. Just like that. No setbacks or regressions. We were home by 1:00 in the afternoon. He was pale to the point of looking sickly and very tired and sore, but it was all very manageable for him. It really was a tender mercy and an unquestionable miracle.

And as for the actual bone marrow harvest, it was a success. They got six million cells per kilogram (the minimum they need is two million), so Max still has his "juicy" cells that we all love so much. The team did say it was a little bit harder to navigate around his hip bone because of all of the leftover holes from last time. I don't know all of the details for how the procedure is done (I'm not sure I want to), but that little fact kind of broke my heart.

Aaron had a bunch of appointments before Friday, but other than that, he was at home, and he felt pretty good. We didn't have any unexpected fevers, and his blood and platelet transfusions happened during business hours instead of in the middle of the night. 

It was just about as nice of a "final" week as I could have asked for. Max was home all week to recover, so he and Aaron built the Hogwarts castle, generously gifted to them by Mike's brother-in-law. They spent three days putting it together, trading back and forth for each bag, and watching Studio C at the same time. It was one of the most fun things they've ever done together, and it will probably be an experience that they look back on with great fondness in years to come.

On Thursday night, Aaron had his "last" meal--pizza from The Pie. As some of you will remember, he has to be on a low microbial diet for the next few months, so takeout or restaurant food of any kind will be completely restricted.

Then on Friday morning, Maxwell, Bradley, Clark, and Ian wrapped him in a big hug and said goodbye. As I already mentioned at the beginning of this post, we were genuinely really happy that the day had finally come to start and not just wait. The thought of separation is always really hard for all of us, but we know that the only way to be reunited is to do this.

The thrill of action was quickly tempered by the reality of chemo, as well as some other (lesser) grievances such as mouth care, limited food choices, and isolation. They started out with a heavy hitter--cyclophosphamide. It made Aaron feel nauseous and sick, but luckily he only had to have one dose of that. Yesterday and today he received fludarabine, which seems to be more mild in its side effects. We can tell these drugs are doing their job since his (already low) white blood count has plummeted since he arrived. 

Operation Kill-All-T-Cells has officially begun.

A Little of This and That in March

Apr 15, 2021

 

I realize that most of my posts lately have been about Aaron, but as the self-appointed memory keeper of our family, it's important to me to keep these little monthly updates going. Believe it or not, all of our days are not spent at the hospital. This month was also filled with . . .

Celebrating . . . Maxwell's eleventh birthday. We kicked off the month in a good way. Max was specific but realistic in his birthday wishes: cinnamon rolls for breakfast, salmon and mashed potatoes for dinner, and any kind of cake for dessert. He savored his presents and spaced them throughout the day. He took joy in the smallest of things and was so easy to please. I'll celebrate him any day of the year.

Finding . . . out that his wish would be granted. Aaron was nominated for Make-a-Wish way back in September of 2019. He declared his wish (a trip to New Zealand) in October, and the trip was planned for the beginning of this year. However, in 2020 all wish trips had to be cancelled because of the pandemic. We asked if it could just be postponed (Aaron was willing to wait for a long time if necessary), but they couldn't have so many backlogged wishes, so they said he would have to choose something new. He finally decided to do a shopping spree since all of his other ideas came with a lot stipulations from Make-a-Wish. At the beginning of the month, his lovely wish granters came by to give him the official news that his wish would be granted later in the summer.

Attending . . . maturation over zoom. Max is in fifth grade this year, which, in our elementary school, is the final grade before junior high. Normally, they have a maturation night at the school to talk about puberty, etc. But with Covid,  they switched it to zoom, and, as with so many other adaptations during this pandemic, I'm a fan. Because we kept ourselves on mute for pretty much the whole time, it made it possible for him to ask me questions right then, in the moment. I didn't have to wait until the whole thing was over, get in the car, and then ask, "So . . . do you have any questions?" I feel like that just puts so much pressure on the kid to articulate or sum up all of the thoughts and questions he might have had during the hour-long presentation. This just felt so much more helpful and natural. 

Continuing . . . with his animal antics. In my January post, I mentioned that Ian loves pretending to be a bird. Two months later, and he is still at it. His default is still a bird, but his transformations are many and varied. A couple of weeks ago, the kids were watching The Lion, the Witch, and the Wardrobe. When Mr. and Mrs. Beaver showed up, Ian's eyes suddenly lit up and he said, "I've never been a baby beaver before!!" One Saturday, he was watching the Clifford show where Clifford is a little puppy. I whispered to Mike, "We're soon going to have a little puppy," and sure enough, as soon as the show was off, Ian was a little barking puppy who followed me around for the rest of the night. 

Admitting . . . that I stink at making Rice Krispies treats. I tried to get a little bit festive on St. Patrick's Day by making green Rice Krispies. Although the finished result was edible, it wasn't on the same level as other homemade versions. It was kind of dry and crunchy--not soft and chewy. It made me realize that although I always think Rice Krispies are going to be so quick and easy (they only have three ingredients, for crying out loud), I have never in my life made a successful batch. Granted, I only make Rice Krispies very rarely, so it's not like I've had a lot of practice, but this doesn't seem to be the kind of thing that should need a lot of practice!! I readily acknowledge that I am not the baker/chef in our family, but nevertheless, I have had great success with things that are much more complicated than Rice Krispies. This is an embarrassment, and I just might have to devote some real time to conquering it.

Building . . . an epic Lego set. My mom gave Aaron a large Land Rover Defender Lego set. The timing was perfect because it coincided with one of his fever hospital stays. He saved it until Sunday, knowing that he wouldn't have as much to do on that day, but it took all of his self control not to break into it early. He started it bright and early on Sunday morning, and he didn't rest until he put in the final piece at about 10:00 that night. It had over 2500 pieces and was the perfect distraction for him. Plus, two of his doctors were as obsessed with it as he was and insisted on taking pictures of it and showing it to the nurses.

Killing . . . my fiddle-leaf plant. I do not have a good track record with houseplants, so I don't know what possessed me to think I could handle a fiddle-leaf, since they are notorious for being finicky (although, to be honest, I didn't know that at the time). I've had it for probably six months now, and it looks more pitiful with each week. It continues to put out new growth, but the leaves turn brown and splotchy, curl up on themselves, or have huge holes in them. I can't decide if I should just call it quits or keep trying. It actually makes me feel guilty every time I look at it, and I can't handle a plant making me feel guilty right now! If you know anything about fiddle leafs and would be willing to help diagnose mine, please text or message me. I'm serious. I would appreciate it so much.  

Celebrating . . . Pi(e) Day. It's a favorite day of ours, and even though Aaron was in the hospital, Mike still managed to make: cherry pie (for breakfast), chicken pot pie (for dinner), and chocolate mousse (for dessert), plus our friends brought over a lemon pie that was simply to die for. Looking forward to brighter days when we can invite the whole neighborhood over again, but for now, we will hang onto this tradition as best we can.


Watching . . . All-Round Champion. We've been loving a new show on BYUtv called All-Round Champion. It takes ten teens and has them compete in ten different sports. They focus on one sport each week, learning how to do it, practicing, and then competing at the end of the week. Each person is an expert in one of the sports and gets to coach everyone else for that week. I love that it celebrates the strengths of each competitor while also expecting them to learn new things. I can't think of another show that does it like this where you get both extremes. It's just been really inspiring to watch these kids get out of their comfort zones, push through the hard and uncomfortable, and cheer each other on. We started with Season 2 because I heard that Season 1 had a horrible ending. Season 3 is currently being released.

Updating . . . our 72-hour kits. I don't even want to say how long it had been since we had cracked open our 72-hour kits, but to give you a hint, none of the clothes fit the intended people (including Mike and me), and we were short a couple of sets. So Mike spent a Friday replacing everything. We are still far underprepared for a long-term disaster, but at least we should be able to manage for a few days.

Finishing . . . a long-time knitting project. I started this blue turtleneck back in August, and I finally finished it this month. I kept putting it aside for various reasons. For one thing, the yarn I was using for it was dyed with indigo, which meant that every time I worked on it, it turned my hands blue. So I tended to only knit on it when I was at home and could easily wash my hands afterwards. I love the color of the yarn, but I had never dealt with yarn bleeding so much, and I found it pretty annoying. The other reason why this sweater took me a long time was because it was knit in pieces, and I've found that these are always slower sweaters for me since I can't try them on as I go (which is super motivating for me). So I knit lots of other things in between, but now that it's done, I love it (and we've had several chilly days when I've been able to wear it). 

Introducing . . . Ramona Quimby to Ian. I started reading Beezus and Ramona to Ian and Clark this month. Those books never get old for me, and Ian was immediately hooked (he might identify a little too easily with Ramona). How fitting it was to be right in the middle of that first book when I found out that Beverly Cleary, at nearly 105 years old, passed away. She was such a legend in children's literature, and it always made me happy to read her books and know that she was still alive. Reading this first book to little Ian made me realize that her legacy is already influencing this newest generation of children. What an immeasurable gift.

Letting . . . a cold run its course through our family. This was one of my least favorite parts of the month. Clark woke up with a cold one morning, and even though we immediately quarantined him, Ian, Maxwell, and Bradley still came down with it one at a time. Aaron was in the hospital for much of the time, which seemed to spare him (or maybe that's why he had so much trouble that week? All of his tests came back negative, but who knows). Clark and Max did Covid tests, both of which were negative, so it seems like it was just a mild, spring cold. Mike and I managed to avoid it, and we're hoping to all stay healthy for the rest of the season.


Making . . . a coordinating outfit. I recently bought some linen for a skirt. As I thought about what I'd want to wear with it, I remembered a cropped cabled sweater pattern I'd saved in my queue awhile ago. I found some forest green yarn that seemed like it would coordinate nicely with the camel color of the skirt. However, as the weather began to warm up, I realized I was making the perfect outfit for October, not necessarily April. So I decided to use some fabric I had in my stash for a T-shirt to go with the skirt. So now I have two outfits--one for the spring and the other for the fall, both using the same skirt.


Going . . . on lots of gorgeous walks. March was a mixed bag as far as the weather was concerned. We had a lot of cold, rainy/snowy days but also some really nice ones. Anytime the weather warmed up, we took advantage of it. 


That seems like a good place to wrap it up for the month. Now I'll go back to my regularly scheduled programming of medical updates.

It's Go Time

Apr 11, 2021

First transplant, September 2019

A few days ago, I stumbled upon an obscure scripture tucked away in the Old Testament. Someone else pointed it out, so I can't take credit for finding it, but it is one that I've returned to several times since. It is a beautiful promise from the Lord and reads: 

"And all these blessings shall come on thee, and overtake thee."

                                                          ~Deuteronomy 28:2

Usually the thought of being chased down and overtaken by something is not pleasant. But if that something is blessings, then I will take it! Big things are on the agenda this week, and I can't help but feel like a multitude of blessings is waiting in the wings for us; they are about to roll forth, gathering strength and power, becoming so numerous as to completely envelope us.

Maxwell has an early check-in time at the hospital tomorrow morning (5:45am). They will put him under general anesthesia and then harvest his stem cells. They draw these out of his hip bone, and they take about two soda cans' worth. It is very painful, which is one of the reasons why they have to put him under to do it. 

Once the procedure is done, they will freeze Max's cells until they are ready to put them into Aaron in about two weeks. (This is different than last time when they did the harvest and transplant all in one day. You can read about the first time here.)

Aaron will be officially admitted to the hospital on this coming Friday. I say "officially" because he has been admitted to the hospital many times during the last two-and-a-half months, including twice this past week. But beginning on Friday, his hospital time will have a purpose.

There is a strict timeline that is followed during a transplant. The actual transplant day is referred to as Day 0. All of the days leading up to Day 0 use a negative number while all of the days following it use a positive number.

Aaron will be admitted to the hospital on Day -7. First, he will go through a conditioning period involving chemotherapy, ATG, and radiation. This will last approximately one week. The actual transplant is scheduled to take place on April 23rd. This will be his new bone marrow birthday. From there, he will continue to stay in the hospital until he engrafts (ie, his body begins to produce healthy blood cells, specifically neutrophils, on its own). This typically happens 14 to 21 days after transplant. Last time, he engrafted on Day +23. 

We know this is going to be hard, but it feels like it will be hard for a reason whereas the days lately have just been hard. 

Maxwell doesn't like it when people call him "brave" or "heroic." The extra attention is hard for him. But I am going to use those words liberally because they are true. He is brave. And he is a hero because he is literally saving his brother's life. I think he doesn't feel all that brave because he is actually pretty nervous and anxious about the whole thing. Last time, he didn't know what to expect, so he went it blindly and naively. This time, he knows. And he's scared. Even though he bounced back fairly quickly, he had a really rough time coming out of the anesthesia and spent most of the day vomiting and feeling nauseous and lightheaded. This was followed by a couple of days of pain where he hobbled around like an old man.  

However, knowing that he knows what this is like and is still willing to go through with it makes him more, not less, brave in my eyes. There is no one else who can do this. It is upon his shoulders, and he is bearing it admirably. He frets but never complains. (At this very moment, he is frosting a banana cake because baking is therapy for him.)

Aaron is home for now. He was in the hospital Monday night to Wednesday afternoon and Thursday night to today. We are going to try an IV anti-fungal and an IV anti-bacterial here at home that will hopefully hold the fevers at bay until Friday. It would be so nice if he could enjoy these last few days at home. 

We are on the cusp of great things. We have already been so blessed, but more blessings are coming. The prayers of so many, together with angelic help, is combining into something powerful that is about to overtake us. I am not saying this is going to be easy. We know it will not be without its complications and pain and bad days. But I really do believe that Aaron is going to rise triumphant from all of this. This intense trial will eventually become a memory, but the blessings from it will last forever. 

Here we go!

Maxwell and Aaron, July 2019

Easter Miracle

Apr 4, 2021

I spent this Easter morning exactly like I wanted to. I woke up slowly and without an alarm, the early light filtering in through the blinds. A quick peek out the window revealed Mt. Olympus looking dazzling as always, brushed by a few soft pink clouds. I somehow managed to wake up before my kids, despite their anticipation of Easter baskets. I pulled out my scriptures and read the accounts of the resurrection in both Matthew and John. 

I love these words so much. They are as familiar to me as the Christmas story in Luke 2: I love the early morning rush back to the sepulchre in order to finish the tasks that had been so hastily done before sunset on Friday. I love the angels sitting on the stone to greet Jesus' followers and tell them the good news. I love Mary's lack of understanding and quiet anguish. But most of all, I love when the Savior comes to her, and the only word He has to utter is "Mary" for her to know who He is. 

Following the general chaos and excitement with the Easter baskets, I stole away for a short walk. I put in just one AirPod so I could listen to my Easter playlist in one ear while I listened to the birds singing in the other. I walked the streets at a leisurely pace--not for exercise, but for meditation. Gratitude came in great, undulating waves, and I let it immerse me.

We've experienced a series of miracles this week. On the surface, they might appear small, but they have not felt that way to us.

On Monday, Maxwell's genetic test finally came in, and it was normal. We all breathed a sigh of relief. I felt almost as giddy as I did when we originally found out he was a perfect match for Aaron. After two and a half months of waiting, we could finally move forward with a plan. 

At Aaron's appointment on Thursday, they handed me a schedule--an actual schedule with dates and times. It made my type A personality very happy. That is, happy until I looked at the actual dates and realized they weren't going to start anything for three more weeks. The schedule showed Aaron being admitted to the hospital on April 20th; this felt like an eternity away. I thought back over the last three weeks, which had been filled with fevers, fainting, bleeding, unplanned trips to the hospital, and multi-night stays. It seemed likely that these coming three weeks could include more of the same.

I felt frustrated. Everything that was on the schedule between now and April 20th was all stuff that seemed like it could have been done weeks ago: a hearing test, a pulmonary function test, a radiation consultation, and an appointment with pharmacy (I mean, seriously? We're putting off the transplant so that we can talk to the pharmacists about all of the medication that we are already very well acquainted with?). None of these things were dependent on knowing whether or not Max was going to be the donor, so it seemed like the coordinator could have gotten them out of the way during all of the weeks of waiting. But no. 

You always hope that your doctors have your child's best interest in mind, but I've found that they are as subject to human nature as the rest of us. They have many patients to worry about, most of whom are very ill and in need of treatment right now. They have overloaded schedules with too much to do in too little time. They have their own families and interests and outside responsibilities. An extra week or two before transplant honestly doesn't make any difference to them.

But it does for us. And that's why Mike called the coordinator that afternoon and asked if there was any way to get things bumped up a little sooner. She acted kind of surprised, like, "Oh, we were trying to space things out so that you wouldn't have to come into the hospital several times a week." And we were like, "Um, we come into the hospital several times a week anyway. It might as well be for something productive!"

Unfortunately, the radiation consultation couldn't be moved up, but everything else could, which means we were able to change Aaron's admission date to the 16th instead of the 20th. It's not much, but we'll take anything at this point. If this experience has taught me anything, it's that parents actually do play a vital role in medical care. We are advocates and are constantly taking in information, checking up on things, asking questions, and pushing for the best care possible. 

But I said I was going to talk about miracles, and here I've been mostly complaining. Actually, getting the date moved up even a little (and having the coordinator actually call us back!) really was a miracle.

Aaron was discharged from the hospital on Monday. He and Mike stayed at Mike's sister's house for a couple of days while the other boys recovered from their colds. But later in the week, we were finally all together again. As we sat around the table eating dinner on Friday night, we realized it had been over two weeks since the last time that had happened (and we are generally very dedicated to eating dinner as a family).

Maxwell went to Aaron's appointment with him on Thursday. Even though he is cleared to be Aaron's donor, they still needed to run quite a few more labs in preparation for the transplant. So he had to have another blood draw (not his favorite, but he is getting better and better at not freaking out). I knew Aaron's doctor wanted to meet Max and get to know him a little bit, so before the appointment, I reminded Max to be friendly and talkative. "Okay," he said, "but I just hope they don't say anything about me being brave." The first thing Dr. Rayes said when he walked in was, "So this is our hero!" I just had to laugh. Max might not like it, but that's really how we all feel. (Incidentally, they've scheduled the harvest of Max's stem cells for April 12th. Rather than have extraction and transplant happen on the same day, they will freeze Max's cells until Aaron has gone through all of his prep.)

Aaron has felt good for almost the entire week. He and Mike had to make a midnight platelet run on Wednesday night, but other than that, there have not been any unexpected medical events. His heart rate has been good. He's had energy. He hasn't had any fevers.

But even more than any of those things, Aaron has had a complete attitude shift. I don't know if it's that he's completely off of the steroids now or that he didn't have any schoolwork this week due to spring break or if angels have taken it upon themselves to buoy him up. Regardless of the reason, he has been cheerful and kind and just so indescribably nice all week. This is the Aaron we're used to, and I'm so glad to have him back.

I have to admit that I've become rather distrustful of good days. I don't like being led into a false sense of security only to have another bomb drop. But I'm trying to just take the approach of living in the present and being grateful for what is right in front of me without worrying that it will all come crashing down. It very well might, but the good days will come back again. 

Besides Easter, this weekend was also General Conference, a semi-annual worldwide broadcast from our church, filled with inspirational music and messages. I loved so many of the talks, but Elder Rasband said something that has stuck with me: "The magnitude does not distinguish the miracle." In other words,  miracles do not have to be big to qualify as miracles.

Every good thing comes from God. This week has been filled with many good things. Each one was a miracle to me.

Aaron and Max, 2010
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