"Hope Ya Know, We Had a Hard Time"

Things started to go downhill almost immediately after I hit "publish" on last week's update. In fact, I kind of wondered if I had jinxed ourselves by sharing how good the week had been--Murphy's Law, and all that.

I had mentioned that Aaron's gums had begun to bleed last Sunday afternoon. We tried for several hours to get them to stop, but we were unsuccessful. Mike took him to the hospital in the late evening, and they got home just before midnight. 

In spite of the late night, I was feeling hopeful. This is great, I thought. Now he won't have to go into the crowded clinic tomorrow for his appointment, and we'll just be able to stay home for a few days.

I was so wrong.

Later the next morning, Aaron just couldn't seem to get going. He was curled up in a blanket on the couch, and it seemed like more than just teenage laziness. I took his temperature; he had a fever; back to the hospital he went. He came home for less than 24 hours on Thursday, but other than that, he has been at the hospital all of this week (including right now).

Among other things, this is what Aaron has been dealing with this week:

• Intermittent fevers that come and go without warning
• Another episode of blacking out in the bathroom (followed by two more instances the same day)
• Plummeting blood pressure every time he stands up (hence, the fainting spells)
• Elevated heart rate
• Low hemoglobin, even after blood transfusions (this happened for three days in a row where he got blood and the next day, he was right back down in the 6's)
• CT scan, chest x-ray, and EKG to try to determine a cause for the fevers and low blood pressure (they all came back normal)
• A battery of labs to search for any antibodies, viruses, bacteria, or fungus that could be causing all of these problems (everything has come back negative so far)
• A violent reaction to a blood transfusion (fever, chills, uncontrollable shaking, etc.)

These things have all been really frightening for us. It is hard to always feel like you're teetering right on the brink and one small push could tip you over into the abyss. 

As the week progressed and everything piled up, Mike and I began to feel desperate. Sometimes I feel like our doctors don't understand the gravity of the situation. I know this isn't true since they continue to hospitalize him and run every test they can think of. But the difference is they are dealing with a whole array of sick kids every day. To them, Aaron is just one more sick kid. They analyze his numbers and look at his test results and determine the next step. But to me, he's my son--the very essence of my being. 

They say, "It's okay. This is not a malignant disease. We have time." And I say, "This isn't malignant, but it is life threatening. Every day that passes means he could get an infection or start to bleed internally, both of which could be fatal." 

It might sound like I'm being melodramatic, but I think our doctors would agree with me that these are real possibilities. 

Which means that this week I became absolutely frantic to get this transplant started. It feels like the only way out at this point. Aaron doesn't have platelets so he's going to continue to bleed. He doesn't have red blood cells so he's going to continue to get lightheaded and dizzy. He doesn't have white blood cells so he's going to continue to have fevers. The only long-lasting way to fix these problems is through a transplant. 

And yet, we continue to hold off the transplant because of one (one!) genetic test. They want to make sure Maxwell does not have a genetic condition known as dyskeratosis congenita (which is basically inherited bone marrow failure). When Aaron was originally diagnosed with aplastic anemia, they ran all of the genetic tests on him, including for dyskeratosis congenita, but they never did them on Max. Since Max and Aaron were perfect matches, as well as siblings, it was highly unlikely that Max would have a genetic condition that Aaron did not. But because the first transplant failed, they had to consider this as a possibility for Max and rule it out before proceeding with him as a donor again. 

We have been waiting for this test result for weeks. At first, we were fine waiting because Aaron was fairly stable. But now things feel so volatile that we asked the doctors, "Can we just move forward with the transplant, even without knowing the results?" To which they responded, "Are you crazy? If Max has this genetic condition, we need to know about it!" To which I responded (in my head), "If I have two children who are genetically similar enough that they are perfect matches, and one of them has idiopathic bone marrow failure and the other has hereditary bone marrow failure, then I will probably have a mental breakdown." The chances seem unlikely, and yet, we've beaten the odds before, so I think they're right to wait. 

But I just needed to know when that test was going to get here. I didn't know how we could wait another few weeks. We asked our doctors if they could call the genetics lab and ask them to bump Max's test up the line (they were rather non-committal about this). Finally on Friday, Mike decided to call the lab himself. He found out what I'd suspected all along--that the actual processing of the blood was done by a machine and there was no way to speed it up. They told him that once it was being processed, it would take 10 to 21 days. We knew from tracking Max's labs that they had started processing it on March 19th. So we figured that the soonest it would be done was sometime next week. 

But then right after Mike got done talking to the lab, he looked up the timeline again and saw that Max's test had been moved from "lab processing" to "analysis and interpretation," and then yesterday, it moved one step further to "clinician review," which is the final step before "report available." So I am extremely hopeful that we will get the results very soon, maybe even tomorrow.

And if we do get the results and they're good results (please let them be good!!), then it's going to be full steam ahead. 

But in the meantime, things are looking up for Aaron. He is still in the hospital, but they gave him a dose of immunoglobulin yesterday, and today his hemoglobin is at 9, his heart rate and blood pressure are normal, and he hasn't had any fevers. He has felt good today--probably the best he's felt all week. He celebrated by putting together a LEGO replica of the White House.

I'm missing that boy though. Mike and I decided not to do any trading back and forth at the hospital this time because Clark's cold from last week spread to all of the other boys (a huge disappointment since I worked so hard to quarantine everyone and make them wear masks), and we didn't want to risk transmitting anything to the hospital. 

One of my friends reminded me of a talk that Elder Quentin L. Cook gave more than twelve years ago. He began the talk by recounting an experience he'd had when he got caught in a spring blizzard with two of his young children. After a night of being stranded, they eventually got towed to a gas station where Elder Cook was able to call his wife and let her know they were okay. He passed the phone to his little three-year-old, who said, "Hope ya know, we had a hard time."

I think if anyone were to ask me about this week, I'd respond with those same words: "Hope ya know, we had a hard time." We just feel beaten down. Even though I don't anticipate this challenge lasting forever, and I still have hope of a full and complete recovery for Aaron, we are in the trenches right now, and I honestly can't see the light (yet). 

It is more than just a physical exhaustion, at least for me. I am spiritually wiped out. Every day, practically every moment, has required me to exert more faith than I have. I am trying to replenish it as quickly as I am using it, but I am running on empty right now. There have been periods of violent weeping where I've lifted my voice to the heavens and yelled, "Hope ya know, I'm having a hard time!" 

Sometimes it feels like my faith literally cannot bear the weight of this trial. I am worried it will crumble and disintegrate with all of my questions that continually pummel it. 

But every time I think about going through this hard thing without my faith, it feels even more unbearable. So each day, I wake up, and I intentionally think the words, Today, I choose to have faith. It is a conscious decision. I choose to see anything good as evidence of the hand of God. I choose to believe that I am receiving heavenly help. I choose to look at this situation through an eternal lens. 

This is not some pleasant, childish game I'm playing where I'm looking at the world through rose-colored glasses. This is real work. It hurts. It leaves me feeling battered and drained. But every time I choose to arm myself with faith once again, I somehow rise triumphant. I wish it would last, but in the words of one of my friends, "The wrestle for my faith starts anew every morning." 

At this very moment, I'm feeling good. Mike just called and said, "I've never seen Aaron this perky in the hospital! He literally just asked me if I wanted to go for a walk around the pod! That's never happened!" That did my heart good. 

So we'll keep at it. And I hope next week I have some good news and some real plans to share with you.

Reprieve

This week was blessedly normal, or at least it felt that way after several weeks of unplanned hospital stays and after-hour phone calls (one of our nurse practitioners said we'd earned our "frequent caller" card). I'm not going to question this reprieve; I'm just going to call it what it is: a miracle. 

The week began with Aaron getting his central line. They gave him platelets right before the surgery, but one bag only brought him up to 38 (he needed to be at 50 or more before they'd do it). So they gave him another bag, which only bumped him up to 52. I have seen one bag get him up to the 80's or 90's, so to only get up to 52 after two bags was disappointing.

However, even though those platelets were few in number, I guess they were mighty and strong because they have lasted all week. When Aaron had his appointment on Thursday, they were down to 22, but they decided not to transfuse him since he wasn't in the single digits and/or bleeding (the two things that necessitate a transfusion). I was pretty sure we'd be back in the next day, but those platelets lasted all weekend. (As I'm writing this, his gums juuuuuust started bleeding, so it looks like he might not make it all the way to Monday, but still, six days on the same platelets is better than we've seen in weeks.)

Anyway, back to the central line. The surgery went well, but man, it left him in a grumpy, unpleasant mood. I'm sure it was a combination of the anesthesia wearing off, the reality of having a line again, and the discomfort and pain from the procedure. They kept him at the hospital until Tuesday morning (he received two units of blood on Monday night) and then sent him home.

From my perspective, having a central line has been very nice. It is quick to draw labs, easy to get transfusions, and the multitude of bruises on his arms and hands are slowly disappearing. I thought I was going to have some PTSD when I had to flush his line again, but honestly, it came right back, just like riding a bike, and it was almost like I never stopped.

The slight wrench in this week came on Thursday morning, and it actually didn't involve Aaron. Clark woke up with a sore throat and a cough. No, I thought, no, no, no, no! We didn't want to deal with Covid on top of everything else. A Covid diagnosis would complicate appointments and treatments and probably delay transplant, not to mention the possible health risks if Aaron got sick. Mike took Clark to get tested, and we all breathed a sigh of relief when it came back negative.

However, Covid or not, we still don't want Aaron (or the rest of us) to get sick. So Clark has been quarantined in his bedroom for the weekend, and the rest of us have been wearing masks around the house. Hopefully that will be enough, but we'll see.

Clark has done remarkably well with the isolation. If you know him in real life, you know that he is a very social person and really needs physical and social interaction with people. He is not the type of person who likes alone time but wants to be with people all day, all of the time. But somehow, he has settled into this quiet space and found things to do (thank goodness for a grandma who brought over a 3-in-1 Lego set and for brothers who let him take apart and rebuild old Lego sets). 

Mike and I were marveling at this newfound ability to be alone. We were seeing a different side of Clark than we'd ever seen before. On Friday night, I said to him, "Clark, I'm sorry you've been so lonely." He replied, "Mom, you're never really alone." "Why's that?" I asked. "Because Jesus is always with you," he said.

I thought it was a cute thing to say at the time, but the more I've thought about it, the more real it has become. Of course Jesus is the reason why Clark has been able to do something that is far beyond his natural ability! I felt the importance of this knowledge, and I went back to him the next day, and I said, "You were right, Clark. Jesus has been with you while you've been in your room. You are never alone because of Jesus." 

Even with Clark's illness, this weekend has still felt like a gift. I will never take normal days for granted. 

Always Good

Last week, it was low platelets that kept landing Aaron in the hospital.

This week, it was fevers.

When you have low platelets, they give you a transfusion and send you on your way; when it's a fever, they run a bunch of cultures, load you up with antibiotics, and won't let you go home.

Which means we've spent a lot of time in the hospital this week. 

Here's a brief recap:

Sunday night: Aaron complained of being freezing, even though he was already under his covers in bed. Mike took his temperature. It was 100.8. They said we could wait an hour and then take it again. It was still 100.8, so they admitted him.

Monday: He got platelets. His fever seemed to be gone. All of his tests came back negative.

Tuesday afternoon: They discharged him, and he came back home.

Wednesday late afternoon: His gums started bleeding. Mike ran him over to the hospital before the clinic closed so he could get platelets. The team was able to see him, which cancelled our need for a Thursday appointment.

Thursday: He was home all day and all night!

Friday: He woke up with a headache. I took his temperature before giving him Tylenol. It was 100.9. I didn't give him Tylenol, waited an hour, took it again, it was under 100. By this time, his headache was gone too. Several hours later, he wasn't feeling well again, so Mike took his temperature, and it was 101.6. The doctors don't mess around with anything above 101, so he was admitted again. It was back down in the afternoon, but spiked to 103.6 in the late evening.

Saturday: Hospital all day but no fevers or bleeding.

Today: Still in the hospital, but no fevers so far, and all tests came back negative.

Tomorrow: Going into surgery to have his central line placed.

It is really common for kids with low or no neutrophils to get what are called "neutropenic fevers." These are simply a result of a lack of neutrophils with no other underlying causes. However, kids with low neutrophils are also at a much higher risk for infections, which is why the doctors take fevers so seriously and rule out everything else before discharging the patient. 

Aaron has had an ANC (neutrophil count) of zero for the past several weeks. On Tuesday, they gave him a dose of neupogen, which is a drug that helps stimulate white blood cells. Unfortunately, it didn't do anything for Aaron, which was another confirmation of his complete bone marrow failure.  

Although we don't have a scheduled date for the transplant yet, they are going to place his central line tomorrow. He has been getting blood and platelets and antibiotics so frequently that his arms and hands are covered with IV holes. The last couple of IVs have taken the IV team a long time of searching with their little light to even find a semi-acceptable spot for a new one. He is simply out of places.

Despite it being obvious that he needs a central line, it is still kind of a mental blow. There is something about getting that central line placed that makes this feel even more real than the blood counts and transfusions. This feels irreversible, like we are setting things in motion and heading down a one-way track, increasing speed until . . . transplant. 

I kind of feel silly even admitting this since everything we've already been doing has been with the end result of transplant in mind. Maybe you have to be me to see where I'm coming from. This is just a big step, and while I know it will be so nice to have right now and will be absolutely essential in a couple of weeks, I am still feeling it hard. (Remember this post when his central line was removed? I really thought that was a final goodbye.)

Today is March 14th, Pi(e) Day. This is one of those random holidays that Mike has always gone all out on--probably because it combines his love of math and food. Several years ago, we started a tradition of inviting the entire neighborhood over to our house for pie. Mike would take a couple of days off of work and churn out dozens of pies to be heartily consumed in the spring sunshine. 

In spite of a pandemic and a serious illness cancelling our festivities for two years in a row, Mike still showed up at the hospital at 8:30 this morning with cherry pie and ice cream (because what's better than pie? Pie for breakfast, of course). When I got home after we traded places at the hospital, I found a chicken pot pie in the fridge waiting to be baked for dinner, and a chocolate mousse pie ready for dessert. We are managing to hold onto our traditions even when life is not exactly feeling normal. This might seem like a good year to let them go, but I think they're helping our kids feel grounded (and baking has always been a kind of therapy for Mike, so it's a win-win). 

This morning as I was driving home from the hospital, I passed the student health center on the corner of Foothill and Mario Cappecchi. When I was pregnant with Aaron, I was a receptionist there for a short time. Although I have passed that building literally hundreds of times in the last year and a half, for some reason today I had a vivid flashback to little 23-year-old me. I saw her pulling charts, answering phones, scheduling appointments--all with a tiny wriggling Aaron inside of her. I remembered her unbridled excitement over this long-awaited pregnancy. 

And now, thirteen years later, here I am driving the same road, but instead of turning in at the health center, I am continuing farther north to Primary Children's. Aaron is no longer a helpless baby but a full-fledged adolescent who it taller than me. 

As I sat at the stoplight, it was as if the past and present converged. 23-year-old me at the receptionist's desk looked across the road at 36-year-old me in a minivan, and somehow, it was all okay. I can't explain it. I didn't feel regret, or even longing, for my unabashed naïveté. We're going to be okay. We are okay. 

I love Christmas songs, and I have long wished that Easter had the same kind of music tradition as Christmas. Wouldn't it be great if we could tune the radio to Easter classics during the month leading up to the actual day? Last year, I decided I would take matters into my own hands and create my own Easter playlist filled with songs of devotion about the Savior and His glorious sacrifice and resurrection. I did the same thing this year, so now I have two really great collections to rotate through. In a few years, maybe I will have as many beloved Easter songs as Christmas. Maybe.

My music search landed me a gem that I have become obsessed with. It is called "Always Good" by Andrew Peterson. I've been listening to it over and over, and each time I do, I think, Yes, this is what I believe. This is what I feel. This has been my experience with this hard thing. 

My three favorite lines are not close to each other in the song, but they fit together remarkably well:

"Somehow this sorrow is shaping my heart like it should.

This heartache is moving me closer than joy ever could.

Will You help us to trust Your intentions for us are still good?"

I don't know why heartache is sometimes more reliable than joy at bringing me closer to Jesus, and I really wish that wasn't the case because I don't like hurting. But here's the truth: There are distinct blessings that come from hard things. Others can't see those blessings as readily from their vantage point on the outside; they can only see the tragedy. But the blessings are there just the same. In spite of this hard thing, I really do believe that Jesus is always good and that every good thing comes from Him. 

But please, can we have a break from the hospital this week?

A Little of This and That in February

I was reading back through one of these monthly update posts from two years ago, and I have to admit, I was kind of longing to go back in time. We just seemed so carefree. 

But time marches on, and these are the activities that occupy our current reality:

Juicing . . . all the things. I impulsively bought a juicer the day after the doctors confirmed Aaron's relapse of aplastic anemia. I felt so helpless and like there wasn't anything I could do to change the situation. I guess one of the ways I coped with those feelings was by purchasing a juicer. I've read about the health benefits of juicing for several years, and I thought it definitely couldn't hurt to give it a try, and it might even help. I was really intimidated when it first arrived and thought I'd made a huge mistake, but I put a few stalks of celery through it, and then I was hooked. It was like magic--it somehow got juice out of something that looked like it shouldn't have any juice in it at all. Not only that, but it churned out the most beautiful, rich, jewel-toned colors I've ever seen. I honestly can't believe it's natural. I had read that red and purple fruits and vegetables were supposed to be especially beneficial to the health of the blood, so I've been doing a lot of beets, black grapes, purple cabbage, apples, and pomegranates. Aaron has been so nice to appease me and dutifully chugs down his glass every day.

Learning . . . to read. Ian was showing all of the signs of being ready to learn how to read, so I pulled out my trusty How to Teach Your Child to Read in 100 Easy Lessons (which is quite battered by this point) and began. So far, he has taken to it quickly. I know from past experience that we'll slow down considerably when we get about halfway through, and that's totally fine. We're just taking it one day at a time and enjoying each step. Watching the process unfold amazes me every time, and it feels like an absolute privilege.

Getting . . . the royal treatment at a BYU basketball game. I already wrote all of the details of our fun evening here, but it's worth a second mention because the memory of it is still giving us life. 

Wishing . . . stake conference would always be virtual. We had stake conference at the beginning of the month, and of course it was virtual due to the pandemic. But as we sat in our family room doing puzzles and Legos while listening to the talks, I thought, Why can't they do it virtually every time? It was so much more pleasant, and I felt like we got a lot more out of it than we usually do. It's one of the things I hope doesn't go away when Covid ends.

Participating . . . in a cool visual activity. Our stake had each teenager write one truth on a sign. Then they stuck those signs on the church lawn. It was really inspiring to walk past it and see all of those truths in one big group. Aaron and Mike did it (Mike is one of the youth leaders in our ward). The signs were due at the church when Aaron was still at the hospital. So I took them over myself. It was the afternoon when I found out his transplant had failed, and I was crying while trying to push the signs down into the frozen ground. Even though that isn't the most pleasant memory, the end result made me happy.

Switching . . . bedrooms. When we moved into this house, Maxwell and Clark shared a room, and Bradley and Ian shared another room. But Bradley was getting a little tired of his roommate who made messes every day, broke his creations, and wouldn't go to sleep at night. So we did a little room switcheroo, and it has turned out to be the best thing ever. Now Bradley and Maxwell are together, and Clark and Ian share the other room. It has been a much better fit. Bradley and Max like to listen to the same thing at night, as do Clark and Ian. And Clark doesn't really pay any attention to Ian's messes (which means their room is pretty much always a mess, even when it was cleaned up just thirty minutes before). Before the room switch, there was a weird rivalry going on between Bradley and Clark over who was Ian's favorite, but now that has pretty much disappeared. All in all, it was a good change.

Enjoying . . . a very lovely Valentine's Day. This year, Valentine's Day coincided with our ward's Fast Sunday (because we had stake conference on the first week of the month). At first I was disappointed because it meant we couldn't do our traditional breakfast. But then we decided to just push it back until lunch when we would be breaking our fast. As so often happens, breaking with tradition somehow made it even more enjoyable. We had sour dough French toast with buttermilk syrup, whipped cream, and berries, as well as sausage, bacon, hash browns, orange juice, and chocolate milk. The boys kept commenting, "This is the best meal I've ever eaten!" As usual, I gave each of the boys a new book, and Mike spoiled us all with filet mignon for dinner.

Sporting . . . some pretty good chipmunk cheeks. Aaron has been on steroids for several weeks. A couple of the side effects are an increased appetite and puffy cheeks. We're seeing both, and even though he is now being weaned off of them, his cheeks are still adorable.

Receiving . . . a good dumping of snow. Along with most of the rest of the country, we had a big snowstorm in the middle of the month that brought with it close to eighteen inches of snow. Up to that point, our winter had been fairly mild with snow coming in brief little bursts that would melt by the afternoon. But finally, we had some snowfall that felt legitimate. The boys pulled out all of their winter gear and suited up for some serious fun. No sledding this year because of Aaron's low platelets, but plenty of snow caves and snow angels. 

Taking . . . lots of unplanned trips to the hospital. That's just our reality right now. As much as we are trying to minimize our time in the hospital, it seems like something is always coming up that warrants some attention. We are so lucky to be so close to the hospital.

Inventing . . . intense face-offs between Battlebots. A few weeks ago, Mike introduced the boys to Battlebots (a competition where teams build their own robots and then have them fight each other). All of them really liked it, but Ian became absolutely obsessed. Every day, he goes into his own world of Battlebots and pits two toys against each other. These battles can last a solid half hour before he grows tired of them. 

Installing . . . a tv in the living room. I can't even believe I'm writing this--I have always been really opposed to having a tv in the main living space because I didn't want it to be a focal point. But when Mike got a pool table for the basement, it made that space less functional for family movie night (but the pool table has been used so often that I think it was probably worth it). So we decided to get a frame tv for upstairs. I like it because it looks like a picture in a frame when it is not being used as a tv, so it serves a dual purpose. At any rate, it has been nice to have it, even if it does go against my principles, haha.

Making . . . a few new items. This month, I sewed a pair of joggers and a blouse. The blouse was quite fun to make as it has a tie in the back, a ruffle across the front, and puffed (!) sleeves. I feel a little bit of Anne Shirley in me when I wear it: "Oh, Marilla! Look at the puffs!" I also knitted a cowl (which I'm a bit disappointed with) and a little dinosaur that Mike gave to one of his coworkers who just had a baby. And I alllllmost finished a sweater. Making continues to be one of the best kinds of therapy for me.

 Researching . . . brick for the fireplace. Our latest home project is the living room. We need to: remove the tile around the fireplace and replace it with brick, build a hearth, take out the spotlights and put in canned lighting, build bookshelves, hang pictures, buy a couple of chairs, and hang curtains. Unfortunately, any sort of construction has been put on hold while Aaron is sick, but that didn't stop Mike and me from going to a store to look at brick samples.

Taking . . . Max out for a little birthday lunch. A couple of days before Maxwell's birthday, Mike and I told him we would take him anywhere for lunch. We knew we could make such an offer because probably the most extravagant place he would want to go would be Chick-fil-a. And sure enough, that's the place he requested, even though we had to eat in the car since they still don't have their dining room open. Max is almost always a joy to be around, but especially when he has you one-on-one (or two-on-one as in this case). He comes up with the most interesting things to talk about, and he relished every bite of chicken sandwich and chicken nuggets (yes, he ordered both because it was for his birthday, and his appetite is hitting adolescence). Afterwards, we went to Handel's for ice cream, and he declared it the best lunch he'd ever had. 

That's a wrap on another month. We're getting the first hints of spring, and I am thrilled to see an end in sight for the cold weather.

Mental Fog

October 2020

A couple of days ago, a friend from the neighborhood stopped by. Our conversation went something like this:

Friend: How did Aaron's appointment go yesterday?

Me: Yesterday? Oh yes, yesterday was Thursday, right? Aaron did go to an appointment yesterday. Let me try to remember . . . yes, it went well . . . I think.

That pretty much sums up the way my brain is processing things lately--slowly, as if I'm always coming out of a fog. It is unlike me to lose my grasp on time; I am one who religiously tracks the passage of minutes and hours and days. 

But recently, the edges of everything have become a bit blurred. Moments fade into and out of each other. Unplanned trips to the hospital push other activities to the side. We've lost our anchors that help us identify the day.

Even our scheduled appointments have been little help in maintaining consistency this week. We were supposed to go to the hospital on Monday and Thursday, but we ended up going on Monday, Tuesday, Thursday, and Friday. So when my friend asked how Aaron's appointment was "yesterday," I had a moment of confusion because, yes, he had gone to the hospital the day before, but he was also there at that very moment, so what day was it anyway?

We have spent the week putting out fires. We resolve one crisis only to have another pop up. Aaron's loose tooth came out in the middle of the night on Tuesday. He had been wanting to pull it out because it was annoying him and making it hard to eat, but his doctors told him to leave it alone because they didn't want him to bleed. But somehow, even being careful, it still came out. Aaron had just received platelets that day, but he still bled most of the night.

On Thursday night, it was the new back molar that wouldn't stop bleeding. And on Friday, it was a bad headache that didn't go away until after a blood transfusion. 

Yesterday morning, Mike and I left the kids doing Saturday jobs, and we went on a long walk in the glorious spring sunshine. We ran into someone we knew, and when they asked how Aaron was, we said, "At this very moment, he's doing fine. But that could change before we even get home." It's that constant tension of never knowing what's coming next that is leaving us feeling exhausted.

But yesterday actually was a good day. From start to finish, it felt so luxuriously normal. Aaron felt good all day. The pain in his mouth even diminished slightly. Max and Bradley played with friends. Mike and Clark went out for ice cream cones. Aaron watched a basketball game. I cleaned my bedroom and seamed up a sweater I've been working on. Ian took a long nap. It just felt so good to be home. 

I have this heightened sense of gratitude. Even in the midst of all of these hard things, I am acutely aware of our blessings. I feel like I'm not even consciously doing it. The gratitude is just there, filling me up and gently softening the blows. I look around and I feel this lightness and hope that I know are not coming from me.  I believe this is a direct answer to the many prayers that have been offered on our behalf. 

As far as real news, I don't have much to offer. Although we feel this sense of urgency to get going with a transplant because we are in crisis mode so much of the time, we also know that it will be to Aaron's advantage to wait for all of the test results to come back so we can make the best possible decision. 

From an outsider's perspective, it might look like the ball isn't rolling or that our doctor's have let things come to a standstill, but that isn't the case at all. In fact, we have several parallel paths moving forward at this very moment to expedite the process as much as possible. I'm not sharing a lot of details, mostly because we haven't come to a firm decision yet, and it's hard to have people assume we're doing one thing just because it has been mentioned as a possibility. I'm sorry for the vagueness--I will definitely give you the full rundown of the plan when it is locked into place. For now, I can tell you that Maxwell had another blood draw on Friday for more tests (he has a strong aversion to needles, but corralled his fears), and we are still 3-4 weeks out from a transplant date.

This week I came across an old talk from President Hinckley that he gave in 1971. He quoted a mantra that a naval officer carried with him during all of his expeditions:

"I believe I am always divinely guided.

I believe I will always take the right road.

I believe God will always make a way where there is no way."

I have repeated these phrases over and over in my mind this week. They have become a type of meditation for me. I am using them to "fan the flame of my faith," as Elder Holland advised. This hope doesn't feel misplaced or naive. It is vibrant and alive. It pulses in me. I can't shake it; I don't want to shake it. I am going to continue to repeat these words and let them carry me forward through these challenging days. 

Deja Vu

This past Tuesday night, Mike and I had just finished watching a show and were getting ready for bed when Aaron came into our room. "My gums are bleeding," he said. My heart sank. It was 10:20 pm. The other boys were already asleep. We were all tired. This is the kind of thing that would be much easier to face in the morning but unfortunately seems to favor the night.

Mike called the on-call nurse practitioner. She suggested a couple of things--ice and a medication that is usually used for nosebleeds--to see if we could get the bleeding to stop. 

When Aaron had labs drawn on Monday, his platelets were at 7, so the fact that his gums were bleeding was not exactly a surprise. When his counts first dropped a month ago, he was able to hang out in the single digits because he was really healthy. But now his mouth is full of problems: swollen and inflamed gums, sores on his tongue, a loose tooth, and a new back molar that chose this inconvenient time to come in. So now it doesn't take much to push his mouth over the edge. Unfortunately, it's the very things that keep his mouth healthy that also cause trauma--things as innocent as brushing his teeth, which he was doing (as gently as he could) on Tuesday night.

Since his platelets are so low, if he starts to bleed, it is very difficult to get him to stop. And that was the case on Tuesday. All of our tricks were unsuccessful. Aaron continued to slowly ooze blood. (Sorry if you're queazy about blood. This might not be a good story for you to read. I feel a bit nauseous myself in these moments.) The nurse practitioner consulted with the on-call doctor who thought we could wait until the next morning if we felt comfortable with it. By this point, it was after 11:00, and Aaron just wanted to go to bed. So we gave him a towel, which seemed sadly primitive, and prayed that it wouldn't get too bad.

It was a long night. Mike set several alarms to go check on Aaron and make sure the situation wasn't any worse. Sleep was fragmented and fitful. The next morning, Aaron's bed looked like a war zone, his mouth being the main offender and casualty.

I took him to the hospital where he got a unit of platelets. The bleeding finally stopped around 3:00 in the afternoon, approximately seventeen hours after it had started. That's a long time to be tasting and swallowing blood, and Aaron felt irritable and sick to his stomach. Platelets are one of those things you don't even think about until you don't have them, and then you realize all that they do for you every day.

Again and again, I get the feeling that I have lived this before. It doesn't just remind me of the past. It feels like the same thing. It is unnerving. 

For example, some of you might remember an almost identical scenario to this one in September 2019. We were at a family reunion. Aaron got bumped in the mouth, and his gums started to bleed. We spent an equally long and fretful night while we monitored his bleeding (the difference in that case was that we were actually out of cell phone reception--seriously, what were we thinking?!--so Mike and Aaron had to leave at 4:00am to drive out of the canyon and call the hospital). 

Everything reminds me of the first time: the fact that Aaron was first diagnosed just a week after we got home from Lake Tahoe; and he relapsed two days after a trip to Arizona; Aaron turned 11 just before his original diagnosis, and Maxwell will turn 11 tomorrow; I emailed Aaron's teachers then, and I'm emailing them again now; I printed some current family photos and chose another scriptural mantra in anticipation of another hospital stay; we are seeing the same nurses at the hospital, saying no to the same activities, praying the same prayers. Same, same, same. 

And I think a part of me worries, If everything is exactly the same, will the final outcome be exactly the same, too? A successful transplant? A strong graft? A year of good health? Only to come crashing back down to ground zero once again? 

You've heard the quote, "The definition of insanity is doing the same thing over and over and expecting different results." That's kind of what this feels like. We are trapped in the cycle of "Low counts, hospital, transfuse, hang tight, repeat."

And that "hang tight" period seems to be getting shorter and shorter with each cycle. On Friday night, two days after Aaron's platelets transfusion, he was back in our bedroom: the place where his new molar was coming in had started to bleed. This time it was triggered not by brushing his teeth or eating, but just moving his tongue around it. Not wanting a repeat of Tuesday night, we had him put pressure on the spot with cold ice. The bleeding slowed down, but as soon as the pressure was released, it picked back up where it left off. Mike decided to just take him in even though it was almost 11:00. They didn't get home until 2:00 am, but at least he didn't have to bleed for hours and hours. (To anyone who has ever donated platelets, make no mistake: you are a hero.)

It is not only pain and worry that feels strikingly familiar but also the love and generosity of our friends and family--you who are reading this post. Every text, phone call, smile, present, meal, treat, gift card, bouquet of flowers, visit, babysitting, and offer to help has come to us before. You bore us up the first time, and you are doing it again. 

This afternoon, Maxwell's teacher stopped by. She was loaded down with gifts: games and LEGO sets and hot wheels cars and a gift card signed by all six of the elementary school teachers who have taught our boys. I felt overwhelmed . . . by love and support, yes, but also, guilt. They already had to carry us once; it doesn't seem fair that they have to do it again. 

There's this illogical part of me that feels like we tricked everyone, like this is some elaborate scam invented to squeeze out every last drop of faith and kindness. Each time someone shows up on our doorstep with something, I get slapped with another dose of guilt. Somehow you all have also been lured into this version of Groundhog's Day, and I'm so sorry about it. 

I was having a really hard time a few nights ago (ironically, it was not one of the nights this week when Aaron was bleeding). I wrote a journal entry that started with, "I hate this so much" and was then followed by sentence after sentence of everything I hated. Yes, I know "hate" is a strong word, and yes, I used it about twenty times on a single page. It was not one of my more noble moments in all of this. Aaron came into my room and laid down on the bed next to me. I said, "I'm sorry I'm crying. I just feel so sad right now." He looked at me and said, "Me, too. This feels harder than last time."

I've pondered why that is, and I think a large part of it is due to the fact that we have done it all before. Although we know life is full of trials and challenges, it kind of feels like there should be some rule that you only have to do the same trial one time. 

But somehow we continue to face each day, and most of those days are not filled with hateful journal entries. I was chatting with someone at church today, and he asked how I was doing, and I said, "Good." And in that moment, I really did feel good. I was dressed up (including makeup!), I was playing some of my favorite hymns on the organ, and I was sitting on the pew with Max and Bradley. The good was overriding the bad.

The poet, Rupi Kaur, wrote: "What is stronger / Than the human heart / Which shatters over and over / And still lives."

I don't think I could count the number of times my heart has shattered in the last nineteen months, but each time it gets put back together, it seems to expand just a little more. And a repaired, living, vibrant heart is one kind of déjà vu I can get behind. 

Frequently Asked Questions

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

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

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

When is the transplant going to take place? 

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

Are you looking for another donor?

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

But then, what about the mismatched blood type?

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

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

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

Will you get a second opinion?

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

How often is Aaron at the hospital? 

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

Is Aaron getting any transfusions?

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

How is Aaron feeling?

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

How is Aaron's mood?

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

What do you need? 

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

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