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

"Hope Ya Know, We Had a Hard Time"

Mar 28, 2021

Aaron, 2011 (I've always loved those dreamboat brown eyes)

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.

Aaron (and Mike), 2009

Reprieve

Mar 21, 2021

Picture and sign by Clark

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

Mar 14, 2021

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

Mar 10, 2021

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.

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