Patience in the Process

Lately my prayers have contained this near-constant refrain: "Please grant me patience in the process." 

Besides this, I find myself asking for a lot of other things: "Please bless Aaron to be able to go to school after this quarter." "Please allow him to return to all of his normal activities." "Please help his friends to remember him when he comes back." "Please give him back his old energy." "Please help his counts to continue to increase and hold stable." "Please make his bone marrow strong." "Please bless him to never relapse ever, ever, ever again." 

But in the middle of all my begging, I take a deep breath and finish with, "And please bless me to have patience in the process."

Because that's what this is: a process. It is not a quick fix or a simple solution, although sometimes it kind of feels like it should be: get rid of the bad cells, put in some new ones, and presto! Good as new! 

But unfortunately, with bone marrow as ravaged as Aaron's was (both by the work of his own T-cells and that of the chemo/ATG/radiation), it takes time to restore what once was. It's a little like the slow process of regrowing an entire forest after everything has been destroyed by a fire (that's my own analogy, by the way, so it might not actually be like that). 

Thankfully, even though it's slow, we are seeing some good progress. We got the results of Aaron's biopsy back. One of the main things they look at in a bone marrow biopsy is, obviously, the health of the bone marrow. When Aaron was diagnosed (both the first and the second time), his cellularity was less than 5%. At 100 days days post transplant, the cellularity for a 13-year-old kid might be anywhere from 10%-50%. 

Before sharing the results, Dr. Rayes said, "I want you all to guess Aaron's cellularity." I could tell that it was good news, but because I'm a pessimist and hate being disappointed, I aimed low and guessed 15%. Mike's and Aaron's guesses were higher but still conservative. 

Dr. Rayes was wearing a mask, but I'm pretty sure he was smiling underneath it when he exclaimed: "It's 50%!" He admitted, "When I saw that the results were in, I was scared to open them because I wanted good news for Aaron. I was so happy when I saw what they were!"

Mike said, "This is great! When he had his bone marrow biopsy after his first transplant, his cellularity was only 20%."

Dr. Rayes stopped him, "What do you mean, 20%? No, it wasn't. I just looked back at his other biopsy, and it looked like they couldn't get a good analysis of the core. The results were inconclusive."

In the middle of all of my good feelings about the current state of Aaron's bone marrow, I felt a little breathless from this revelation from the past. At the time of Aaron's post-100 days biopsy the first time, I wrote down our conversation with the doctor after he shared the results (this is one of the blessings of keeping a fairly detailed record--I don't have to rely on my own memory but can easily go back and read how it all transpired). At the time, the doctor said that Aaron's cellularity was 20% and that, although this wasn't ideal, it also wasn't unheard of. He never mentioned the inconclusive data and certainly never told us that 20% was merely a made-up estimate.

I didn't know enough to question this report (and for some reason, this is one we can't look up ourselves). But knowing what ended up happening in January of this year, I think that biopsy was our first red flag that things weren't going as well as we were hoping. In fact, I think if another biopsy had been performed when Aaron was one year post-transplant (which it was not), it would have shown struggling bone marrow.

If the doctors had been frank with us or added another data point via biopsy, would this have changed the ultimate outcome for Aaron's bone marrow? No. The graft still would have failed; Aaron still would have had to do another transplant.

But . . . we would not have been blindsided. 

We would have been prepared for a likely, though highly undesirable, outcome. 

As we've been going through this second transplant, my number one fear is that the transplant will fail again . . . and that we will once again be merrily going about our lives when it crumbles without warning. 

I think about this constantly. Every time someone asks me how Aaron is doing, I answer with hesitation: "He's doing well . . . I think . . . at least it seems like it right now." I'm terrified of giving a definitive statement because I can't forget that I gave such a one back in January, less than a week before his world came crashing down again. 

Of course, none of us know what the future holds. There are a million ways for the trajectory of our lives to be changed in an instant. Bone marrow failure is the thing I happen to fear the most right now because it is what is consuming my mind and heart. But any number of equally drastic or challenging events could also happen, just like that. 

I don't expect Aaron's doctors to be magicians and predict the future. But I think we deserve to know the facts instead of being sheltered from them. And I think questionable results call for a re-test.

I've been thinking about this a lot because the bone marrow biopsy revealed something else. The T-cells, which had been 100% Maxwell's when we did a chimerism in June, are now only 82%. The doctor had warned us that, just because they were 100%, didn't mean they would stay there. So seeing a change wasn't necessarily alarming, although 100% to 82% seemed like a rather significant drop to me. 

Dr. Rayes assured us that he wasn't one bit concerned about the T-cells. The rest of the chimerism was still 100%, and those are the numbers they tend to pay more attention to. The T-cells can fluctuate, and a mixed chimerism usually helps keep GVHD at bay. Plus, now that Aaron is being tapered off of the immunosuppressive, Maxwell's T-cells will probably finally have a chance to take hold. But I can't help remembering that is was most likely Aaron's T-cells that took out his bone marrow both the first and the second time, and I would just feel so much better if there weren't any of them left.

Also, knowing more of the full picture of the biopsy from the first transplant, I'm feeling less willing to trust that what the doctor says to us in the exam room is the same thing the team says behind closed doors. Are these shifting percentages in T-cells really not a concern for them . . . or only when they're talking to us? 

It is these unanswered questions that make me feel so uncertain about the future, even as we keep moving forward in a generally positive direction. And that is why when I am praying, I often cast aside specific requests and simply ask, "Please grant me patience in this process." 

Aaron in June 2013, age 4

An End and a Beginning

I have two noteworthy items to share this week:

The first is that Aaron had his central line removed on Friday! This is a big milestone. It means that he is no longer dependent on transfusions, IV medications, or anything else that needs to go through a line.

We remember the days when he was getting 2-3 platelet transfusions every week. We remember when he required two "brains" with four pumps each on his IV pole while he was in the hospital, just to handle all of the medication he needed. We remember the six weeks at home when he was getting foscarnate, magnesium, and micafungin through his central line--totaling 8-10 hours of infusions every day. We remember flushing it every morning and night since it was placed in March. 

Saying goodbye to this line is a giant step in the right direction. One by one, Aaron is cutting the strings that have kept him tethered for so long. At this point, he takes several oral medications twice a day, goes into the clinic once a week, stays away from large groups of people, and that's pretty much it. 

While he was unconscious getting his line removed, they also performed a bone marrow biopsy to check on his chimerism and cellularity. We'll have those results in the next week or so. I know there's nothing I can do to influence them one way or the other, but I still spend my time worrying. I can't help it. 

In the meantime, school is helping to distract all of us, although it comes with its own set of worries.

On Monday, Mike and I met with the school counselor and assistant principal to discuss Aaron's situation.

As much as we wanted Aaron to be able to go to school, we had decided that it would not be a good idea for at least the first quarter. However, our school district only offered one virtual option. If you chose not to attend in-person, you would be put in an online school with all of the other online students from various schools across the district. 

I did not feel good about this option. For one, it seemed like it would make for a difficult transition when the time came for Aaron to return to school (which we hope is sooner rather than later). For another, Aaron is currently enrolled in all GT classes at his school, but the online school did not offer any accelerated options. 

When I asked the counselor and assistant principal if we could keep Aaron enrolled and just have him access, complete, and turn in all of his assignments online, they said that such an arrangement would not be possible. The district was really trying to motivate people to attend school since students are more successful when they're in the classroom with their peers (don't I know it!). If schools were given too much flexibility, then there would be too many students opting out of in-person learning.

While I understood the reasoning behind this decision, I felt like Aaron was a unique case (. . . "but my child is special!!!"), not only because he had a serious medical condition that had nothing to do with Covid, but also because we were hoping his absence would be temporary. The tears were threatening to spill as I pled for a creative solution.

They were sympathetic to our situation (and so nice!), but they felt like their hands were tied. But then they decided to call in one of the other counselors to discuss the possibility of home hospital. This counselor was a miracle worker. She was seasoned and experienced and determined to find a good solution for Aaron. She changed the tone in the room, invigorated the other two, and opened our minds to other possibilities. We started brainstorming and making a list of options. By the end of the meeting, we had delegated assignments to each person. The counselor promised to touch base soon. I left feeling hopeful, even though we hadn't come to any specific resolutions.

A couple of days later, she called and told me that our original plan was going to work: keep Aaron enrolled in school with a medical absence for the quarter; work with each of his teachers individually to get his assignments each week; complete his work online. She had reached out to each of Aaron's teachers, and they were all onboard with the idea. I was overwhelmed with gratitude for a school that genuinely cares about not only the collective classroom but the individual student. 

We still have no idea how well our plan will work, but we're about to find out. School starts tomorrow!

A Little of This and That in July

Looking back over July, I wish I would have pulled out my camera a bit more frequently. We didn't have much that was especially notable to document, but our regular life was pretty sweet, and I feel like we totally embraced the concept of "lazy days of summer." Our days were filled with things like . . . 

Shooting . . . off rockets. Our Fourth of July was rather underwhelming. No parades (because of crowds), no family parties (same reason), and no fireworks (because of the drought). I probably could have taken the many free hours to inspire the boys with tales of patriotic bravery, but I failed. In the end, Mike's sister saved our boredom by inviting us over for ice cream. And then the next morning, we made and launched paper rockets with some friends. And that seemed like enough for this year.

Attending . . . a diving class. One of Bradley's cousins began diving in June and recommended it to him. He was very interested and ended up doing the July session with her. In just the course of a month, he learned several dives, different approaches, and many techniques. I was most nervous watching Bradley do a backwards falling dive off of the three-meter, but luckily, he doesn't let fears inhibit him. The month ended with a little practice meet where everyone did several dives and were judged on their execution. (Somehow I ended up being the second judge along with the coach, even though I have no qualifications or experience whatsoever.) This diving class was perfect timing for the Olympics since it is always more fun to watch a sport when you have at least a little experience in it, and we thoroughly enjoyed watching all of the diving events. 

Spending . . . a few days at the cabin. One of my kids' main wishes for this summer was to go to the cabin. Luckily, Mike's parents spent most of July there and invited the boys to come stay with them for a few days. Aaron couldn't stay for the duration of the time for medical reasons, but we all spent the day there when we dropped off the other boys and again when we picked them up. They spent their time playing games, shooting BB guns, hunting for bugs, going on hikes, and playing in the stream. It was a good time all around (except maybe for Mike's parents who probably were grateful for the peace and quiet that came when they were finally all gone!). 

Buying . . . a suburban. Here's a little known fact about Mike: he loves searching for a good deal on a used car. So when I mentioned a couple of months ago that it might be nice to have a vehicle with a little more room for future road trips, he was happy to have something to look for in the classifieds. And after looking at and driving a bunch of them, he finally found one that was exactly what he wanted. Clark was thrilled about the sun roof ("I've always wanted one of these!!"), but other than that, it's nothing to get too excited about. It's fifteen years old, which is pretty typical of the vehicles Mike decides to buy. He just has no interest in new cars at all.  

Running . . .  around with friends. We moved right at the beginning of the pandemic last year. Clark was used to playing with a posse of friends every afternoon, but he didn't know anyone when we moved, and it wasn't a great time to be knocking on doors, inviting others to play. But all that has changed this summer. There are three other second graders right across the street from us, and finally, after more than a year of very little social time, Clark is on the move again, rounding up his friends every day for all kinds of adventures. Luckily, they've been able to play outside so I don't have to worry as much about Covid, and I'm so happy that my little extroverted child has an outlet once again for all of his social energy.

Playing . . . games with friends. While Clark has been running around the neighborhood, the older boys have been playing board and card games on the porch with our neighbors. It's unfortunate the temps haven't been a little cooler, but if they do it when the porch is shaded, it isn't too bad. They've been having great fun and have been able to share some of their favorite games as well as learn new ones. 

Having . . . a visitor at the pool. One day, Clark, Ian, and I were at our neighborhood pool. We pretty much had the pool to ourselves . . . except for a duck who thought the water was just as nice and inviting as we did. The lifeguards did everything they could to get the duck to leave, but even though he responded to their chase by flying around, he always landed back in the water. They eventually gave up, and the duck and swimmers shared the facilities for the afternoon. Clark thought it was pretty much the best day ever at the pool. 

Resurrecting . . . Bodie. You might remember that Clark received a beta fish for Christmas. He has loved that little fish and has cared for it to the best of his ability. Unfortunately, he's not really capable of cleaning the tank by himself, so a few weeks ago he was badgering Mike to clean it because it had been awhile and there was some buildup. It wasn't a high priority for Mike, so more days went by. Then Clark noticed that Bodie's fin was beginning to turn white. He freaked out. He was convinced that Bodie was sick. Mike brushed him off, saying that Bodie was fine, but Clark, ever the persistent one, eventually got Mike to look it up, and sure enough, discoloration on a beta is indicative of "fin rot." Sounds pleasant, right? By the time we found this out, it was too late to go to the store and get the medicine to treat it, and in the meantime, Bodie seemed to be fading fast. He was hardly moving at all and even went up into the filter, presumably to die. Clark was beside himself (until Mike promised to buy him a new fish, and then the possibility of something new and shiny totally distracted him--he's a rather fair weather friend). But miraculously, Bodie hung on until we could get the medicine, and within a few days, he seemed to be doing much better. Crisis averted . . . for now. 

Raising . . . another praying mantis. After the drama of last month, I thought we were done with any praying mantis for a good long while. But then Max found one on our kitchen window, and he couldn't let such a golden opportunity pass by. This one was a little bigger than the other ones he tried to keep, and consequently, she has been thriving. Max named her Patience, and he has been feeding her a variety of bugs every day. He loves watching her be as still as stone until she snatches her unsuspecting prey. 

Taking . . . a morning walk. After months of running religiously (either outside or on the treadmill), I had a mini-revelation: I don't like running. And since I've been dedicated to it for quite some time, it's safe to say I probably will never like it. When I run, I have to find something to distract myself the whole time: if I'm on the treadmill, a super engaging show; and if I'm running outside, some soul-pumping music. But one morning, I had a little chat with myself. I realized that the only reason I was running was for a little bit of exercise every day (I was a strict 20-minutes/2-miles kind of runner). I had no ambitions of running a marathon or toning my body or anything like that. So really, walking would give me the same benefits I was looking for, except that I would have the added benefit of being able to stay present in the moment instead of trying to escape for twenty minutes. So it would be not only physically healthy, but mentally as well. I switched to a 30-minute walk instead of a 20-minute run, and I love it so much. I don't bring my headphones. Instead I let my thoughts wander--sometimes to profound places, sometimes to trivial. I pay attention to the feeling of the rising sun on my back, the sound of birds in the trees, the beauty of our neighborhood. I have a favorite game of choosing one thing I love from every yard that I pass. Sometimes I focus in on what I can hear: shoes on pavement, wind in trees, bees buzzing, crickets chirping and then stopping as soon as I get too close. Basically, I am in love with this way of getting out and moving my body, and I'm so glad I gave myself permission to let go of what I thought I should be doing and trading it for something that fills me up in a real way. 

Watching . . . ALL of the Olympics. And that's not really an exaggeration. From opening to closing ceremonies, we watched every event we could find. We loved watching skateboarding, surfing, and sports climbing debut for the first time. We were so happy to see one of our favorite swimmers, Katie Ledecky, capture the gold again. We loved the tears from Caleb Dressel, Tom Daley's knitting in the stands, and the quiet victory of Sydney McLaughlin. The acts of sportsmanship and teamwork were inspiring. I basically gave my kids free rein for the entire two weeks. As soon as their jobs were done, they could watch as much Olympic-coverage as they wanted. And they watched a lot. It was just so much fun, and we're all looking forward to the Winter Olympics in just six months.

Holding . . . our family book club. This is our fourth summer of doing a book club as a family. It's always a bit tricky to find a book that Clark will be able to read and understand but that will still be interesting to Aaron and Mike. This year I landed on a good one: When Stars are Scattered by Omar Mohamed and Victoria Jamieson. Because of the graphic novel format, it was very accessible to Clark, but the content about two brothers growing up in a refugee camp in Kenya was thought-provoking and inspiring to all of us. We had a good discussion, but I'm not too naive to realize that my kids are really just in it for the food. 

Losing . . . my enthusiasm for knitting, and I think I know why. I started a blanket, which I was initially excited about, but after a couple of inches, I just wasn't happy with the way it was looking. I've still been working on it, but definitely not every day and only when I don't have something else to work on. I still might frog the whole thing ("frog" is knitting lingo for "unravel it"). Besides the blanket, I was also working on two little items to give as baby gifts. The process of knitting them wasn't horrible, but the finished objects left me dissatisfied. I can't tell if they're cute or not. Having two "meh" projects has just zapped my knitting energy. Just like slogging through a book that isn't enjoyable, I think maybe I've learned my lesson with not pushing through a project that isn't making me excited.

Meeting . . . all of the new babies. We had three babies born in our families within a three-week span, and it's just the best. There's nothing like holding a new baby. Clark has been especially obsessed. He would hold any one of them all day if he had the chance. 

Gathering . . . ideas for our yard. Since moving into our house over a year ago, we (mostly Mike) have done a lot of work on our yard. But there is still so much that needs to be done. We held off for most of the summer because of the drought, but we're trying to make some plans so we can maximize our time in the fall. One Saturday, we went to the Conservation Garden Park, which has a bunch of layouts and designs for appropriate plants and water conservation in Utah's climate. It was super helpful. 

Celebrating . . . Aaron's 13th birthday! Every time I think about him being thirteen, I'm like, "Wait . . . what?!" But he sure is a nice teenager so far. He received all sorts of fun presents, including his own ukulele (he was borrowing mine while doing lessons with my dad this summer). Mike borrowed a go-cart from a friend and set up a course in a parking lot. The boys timed themselves on the course and raced it over and over for faster times. When Mike asked Aaron what he wanted to eat on his birthday, the only thing he could think of was bacon, so Mike creatively included bacon in every meal (except for dessert,  which was cherry pie and vanilla ice cream because Aaron doesn't like cake). 

I have to admit I was pretty sad to see July come to a close. It was a good month, and summer has gone by too fast. 

100 Days and 13 Years

Aaron hit two big milestones this past week: He turned 13 years old, making him an official teenager. And he made it to Day +100.

100 days post-transplant is significant for a bunch of reasons: the threat for GVHD goes down; blood counts generally stabilize; certain medications are reduced or even eliminated; the central line is removed; another bone marrow biopsy is performed to check the cellularity and chimerism; restrictions from the low-microbial diet are lessened; and, in some cases, the weaning process of the immunosuppressant (in this case, tacrolimus) begins.

There's an emotional reward that comes with 100 days as well. We've come so far, and it feels like maybe, hopefully, we're through the worst part of the storm. We can just begin to make out the line of the horizon after a long night. We are pointing our boat towards the future.

With Aaron's first transplant, the bone marrow team chose to wait until he was six months post-transplant before beginning to wean him off of tacro. This is the normal procedure for patients with bone marrow failure (in contrast with leukemia patients, who usually begin the weaning process at Day +100). 

At this point, it is that immunosuppressant that is keeping Aaron tied to home more than anything else. Even though he feels well and his counts look relatively good, his lack of immune system puts him in a very vulnerable state. 

As just an example of what the immunosuppressant does, let's take a look at the Covid-19 vaccine. With cases surging right now, I would love for Aaron to be able to have the protection offered by the vaccine. But even though he is old enough, the immunosuppressant would make it completely ineffective. A vaccine works because it triggers an immune response and the body builds up antibodies, which can later be called on to fight the virus if it is encountered. But with Aaron, his immune system is asleep. So if he got the vaccine, there would be no immune response. His body would ignore it. 

Unfortunately, if his immune system won't pay attention to a vaccine, it also won't pay attention to a virus. Something could be wreaking havoc inside of him, and his immune system, particularly his T-cells, would just sleep right through it. This is exactly why the doctors were so proactive with treating CMV a couple of months ago. His immune system wasn't paying any attention to it, so it could have stealthily wiped out his transplant. 

Anyway, all this to say that we were staring down another three months on this drug while Aaron sat around at home, twirling his thumbs, waiting for something to happen.

But then on Friday, Dr. R. burst into the exam room with, in Mike's words, "guns a-blazing." I'm not sure that's exactly the right idiom, but basically what he meant was that the doctor came in with a plan of action, which he intended to implement immediately, to get things moving for Aaron.

At the heart of this plan was to begin tapering the tacro. 

And just like that, three months of waiting vanished. How can I describe to you the feeling of thinking you're going to be waiting until the end of October but then having it suddenly jump forward to that very day? It was a gift: "Here, you can resume your life three months sooner than originally planned." 

To be honest, Mike and I had wondered if tapering the tacro early was a possibility, since we knew that it was done with cancer patients. We had discussed it several times between ourselves but ultimately decided not to bring it up with the doctor because it didn't seem likely to get a good response. 

But then that's exactly the plan he came up with.

As I mentioned last week, we've been thinking about the school situation a lot, trying to determine if there's a safe way for Aaron to go at least part of the time. I think this got the team thinking about Aaron's particular situation and if it was wise to wait until six months post-transplant to begin the taper. 

And what they ultimately decided was it would be beneficial to get Aaron off of tacro as soon as it was safely possible. In Dr. R's words, "This is not a compromise. It is what I'm advising you to do." I think he wanted to make sure we knew that he wouldn't consider jeopardizing Aaron's health just to get him back in school sooner. 

Instead, the reason why they decided to taper tacro three months early was the answer to this question: "What is the one thing we are most concerned about?" Graft failure. This is what happened in January, and we are doing everything we can to ensure it doesn't happen again. 

In a couple of weeks, Aaron will have another bone marrow biopsy. This will give us key information about the health of his bone marrow. Particularly, we will be able to see what his T-cells are up to. What percentage of them are Aaron's vs. Maxwell's? When they drew a blood chimerism in June, it looked like the T-cells were 100% Maxwell's, but the biopsy will give us a more accurate picture, particularly if anything is starting to go wrong and Aaron's cells are making a comeback. If this is the case, then we actually want the immune system to be back up and running to knock Aaron's cells back down.

And if that's not the case and things still look good on the bone marrow front, then we still want to restore his immune system so he can protect himself from illnesses this fall and winter. Either way, it's a win-win.

Maybe.

There is, unfortunately, always the threat of GVHD, and the risk of this actually goes up as the immunosuppressant goes down. GVHD can be mild and treatable, but sometimes in can cause chronic complications that are very debilitating. The good news is that Aaron's individual risk is relatively low because: he didn't experience any GVHD the first time, this is his second transplant, and we used the same donor. 

Even though it looks like we're shaving three months off of Aaron's sentence, there are still a lot of things that could happen to slow it back down. So we're trying really hard not get ahead of ourselves or celebrate too early. 

But we have to celebrate a little, right? He is at Day +100, after all.