Compare and Contrast

May 2, 2021

Yesterday, Mike called. He said, "Tell Aaron to look out the window." Aaron was confused. "This window?" he asked. He looked out, and then he looked down. There stood the cutest little band of brothers holding up letters to form the word "Aaron." 

They waved back and forth, and then Aaron said, "I wish they could come up here." The separation has been one of the hardest parts through all of this. Mike and I don't feel it quite as much since we trade back and forth, but the boys are all feeling it hard. 

We don't know yet when Aaron will be able to go home. It depends on a number of factors (the biggest one being engraftment), but the doctors don't like to make guesses on hypotheticals. I don't know why--it's not like I'm trying to get them to sign a contract or anything. I just want to talk through certain situations, such as, "If Aaron engrafts on Day +14, will he need to stay in the hospital for a few more days or is there a chance he might be able to come home that same day?"

I'm asking partly because I need to be prepared for his arrival home. Last time, he didn't engraft until Day +23, but then they ended up discharging him on the same day, which made for a mad scramble at home to get the house ready for him. I'm trying to avoid such a scramble this time.

Even though he engrafted late last time, that is not in any way an indication of what will happen this time. In fact, the doctors are pushing for early engraftment. The day after transplant, they started him on neupogen (a drug that helps stimulate the growth of neutrophils), and he's received it every day since then.(Last time, they didn't give him any neupogen at all until Day +22.) We haven't seen any neutrophils yet (as expected), but the ground is being prepared so that when those cells start to come in, they will have a fertile place to grow. 

With the first transplant, the team acted like it was important for Aaron to build a strong graft on his own and that slower was usually better, as it lessened the risk of GVHD. This time, they seem to think any neutrophils are better than none, so the sooner he can get some, the better. (I think this change in the plan has less to do with Aaron's failed first transplant and more to do with a new doctor being added to the team who has his own ideas of the way things should be done. However, since it did fail the first time, I'm up for any changes they want to make. Let's not do the same things and get the same results, am I right?)

There have been a number of other differences as well. At the beginning of the week, Aaron was mostly sleeping and not eating (and what he did eat tended to eventually come back up). When they got his weight on Monday, I noticed it had taken a hit. I called Mike and said, "I bet they're going to want to start him on TPN [IV nutrition]." And sure enough, the first thing the nurse practitioner said when she walked in was, "We're going to start doing TPN tonight."

Aaron never had to be on TPN last time. It always surprised the nurses since it is pretty much a given with bone marrow patients. So when they put him on it this time, everyone just acted like it was par for the course and not a big deal at all, but it felt discouraging to me since it was one more thing that needed to be running through his central line all of the time (and also, it was one more thing that would eventually need to be checked off and removed). However, in spite of my reservations, I think it was definitely the right decision. It took the pressure off of Aaron to consume a certain number of calories (which was absolutely impossible for him anyway), and it also helped to stabilize his blood sugar, which seemed to have the added benefit of minimizing his nausea. So all in all, a positive thing, and as the week has gone on, he has gradually felt like eating more.

Another thing that has been different is his need for oxygen. At first, it seemed to be the ATG that was causing his oxygen level to drop, but now it's more likely because he has spent so much time in bed that his lungs have partially collapsed. His oxygen level is fine when he is sitting up or moving around, but anytime he falls asleep, it dips back down. So oxygen has become another one of his (many) companions during the night.

I went home on Monday night, and Mike took my place. It had been a very lonely weekend. Aaron had slept for almost all of it, and even when he was awake, he didn't say a word. He had a mild case of mucositis (a side effect of chemotherapy). He didn't get horrible mouth sores, but he had a lot of thick secretions that made him feel nauseous and gag if he tried to talk. Mike had taken the boys to southern Utah for his grandma's funeral, and so I couldn't even FaceTime with him the way I normally do. Although it was easier in some ways to have Aaron sleeping through the discomfort, sitting in a darkened hospital room for hours on end was not the best for my mental health (and I'm an introvert who generally craves quiet, so that's saying something). 

On Tuesday, Aaron was back to being awake, but not for a good reason. The palms of his hands (and after awhile, the soles of his feet) started to itch. If you've ever had uninterrupted itching, you know it can make you feel like you're going crazy. And that's how it was for him. It was so bad, he couldn't even fall asleep, even after he'd been awake all day and was on two different drugs that should have made him tired. Mike was at the hospital for all of this, and he was frantic to try to bring Aaron some relief. The team said it was the tacrolimus (immunosuppressive drug) that was causing it. This was the same drug that Aaron was on with his first transplant, but he never had any side effects with it back then.

He gets tacro twice a day, and it's an infusion that runs over the course of two hours. When he goes home, it will be switched to an oral version, which we are very familiar with since we gave it to him for eight months. Apparently, it's the iv infusion that causes itchiness, and this is usually not a problem with the oral. So of course we asked the obvious: could he just switch to oral now? But they wouldn't even consider it. They said they can't risk having the immune system wake up while he's trying to engraft.

So instead, they tried a couple of other things: they lengthened the infusion time to three hours instead of two, and they also put him on an antihistamine. Mike also made him lots of ice packs, which helped to lessen the discomfort. Thankfully, these things seemed to do the trick, and the itchiness has diminished almost completely. Another side effect from this drug this time around is tremors in his hands, but since they're not inhibiting his ability to build with Lego, he doesn't seem to mind. 

Speaking of Lego, we've decided that the best way to gauge how well Aaron is feeling is by the number of Lego sets he can churn out in a day. Last week, it took him four days to build the San Francisco skyline. It was painful to watch. He couldn't focus; he was exhausted after putting together just a few pieces; and he couldn't manage to sit up without feeling nauseous. In contrast, just yesterday he put together the London skyline (a very similar set in terms of size and style) in a single sitting (less than a couple of hours).

This weekend he really seemed to turn a corner. He doesn't have his teenage boy appetite back, but he is eating little bits throughout the day. He has been up and out of his bed and has even done short sessions of physical therapy (without the physical therapist). He has been brushing his teeth and doing his mouth care with only minimal complaining (a huge step). Yesterday he didn't throw up at all. And of course all of this means that he has been blowing through the Lego. 

But maybe the best improvement is that he has turned back into "nice Aaron." He is chatty with the nurses and doctors (and me!). He smiles a lot. He asks politely for things. He is affectionate. He is rational and agreeable. These are all things that have been mostly missing over the last couple of weeks. (When I got home last Monday and the other boys rushed to give me hugs, I might have exclaimed, "Oh yes! It is so good to be with boys who like me!") I am not saying that his silent, unpleasant demeanor was unwarranted or not understandable. Quite the opposite. But every time he gets sick and irritable and silent, I worry that this illness has forever changed his temperament, so it is always such a relief when he becomes himself again.

This experience has given me more compassion for people in general. President Eyring once shared something he had been taught: "Hal, when you meet someone, treat them as if they were in serious trouble, and you will be right more than half the time." In Aaron's case, people are generally very compassionate because it is obvious that he is quite sick. They don't take it personally when he doesn't answer a question or has a scowl on his face. They blame the way he is acting on the hard thing he is going through, not on himself. But when a challenge is silent and invisible, as so many are, it is much easier to assume the worst about people instead of giving them the benefit of the doubt.

On Friday we hit the two-week mark in the hospital. This meant that we had to take everything out of Aaron's room so they could give it a deep clean. For such a small room, it is amazing how much we can still pack into it, so it was an all-morning affair. They moves us to a different room in the same pod but on the opposite side. I took down all of the pictures on the walls and packed up everything from the closet and drawers. We helped Aaron out of bed and found his long-neglected flip flops and walked the short distance to the new room. You would think that hospital rooms would be pretty much the same, but we instantly noticed some differences: the walls were bright yellow instead of cool blue-gray; the view from the bed and couch was of the hospital and a gravel roof; the west sun was pouring in through the window; and the "Lego shelf" was six inches shorter. 

We were both disappointed but agreed that we could handle it. I just hate making things more difficult for people, and it seemed like asking for a different room would surely  for someone. However, as I started to unpack, I thought, Why don't I just ask if we can have his old room back after they're done cleaning it? It can't hurt to ask, and if I don't mention it now, it will be too late. I pictured myself walking past his old room every day and feeling so jealous of whoever got it after him. It didn't seem like it should be a big deal, but for some reason it was, and the more I thought about being in that room for another week or two, the worse it seemed. So I quickly called in the nurse and, very apologetically, asked if we could have Aaron's old room back. And she said we could. No one had been assigned to that room yet, so after it was cleaned, we hauled our stuff back over. "Home" never felt so good. 

Where we were once disgruntled about being in a hospital room, we were now overjoyed that as long as we had to be in the hospital, at least it was in this room. We sat on the couch and looked out at the capitol and said, "Isn't this view amazing?" We admired the calming color of the walls. We appreciated the perfect, muted light. We filled up the Lego shelf and exclaimed, "Aren't we lucky to have such a nice, long shelf?" A little perspective never hurts, and coming so close to losing our room means that we appreciate it tenfold. 

A few days ago, Aaron had an extra nurse who was being trained on bone marrow. There's a certain leveling up that happens in this unit: first, there are just regular nursing duties; then you get trained on chemotherapy, then easy bone marrow patients, and finally hard bone marrow patients. Aaron is considered an "easy" bone marrow patient because he is doing so well and has relatively few complications. More than one nurse has said that it is very typical to see bone marrow kids on a pain pump between Days +3 and +10, but aside from a little bit of bone pain (his doctor yesterday: "You know what that means--engraftment!"), Aaron hasn't had any pain at all. He's tried out pretty much every available anti-nausea medication but has been able to avoid the pain meds, so it feels like a victory. 

So that's the report for the week. Things are looking up, engraftment is on the horizon, and we are continuing to take one day at a time.


  1. Thanks for always taking the time to write these updates. Glad the week went pretty well. ❤️

  2. You’re amazing. You all are. I love all the details, thank you thank you for sharing your journey so publicly and candidly.

  3. Despite all of his challenges, it appears to me that he is growing from a boy into a young man. Is that true? Also thanks Amy for the update!

  4. Thank you for your timely and informative updates. We love you all and are so glad things are going as well as they are !

  5. Thank you for the update! We love y'all.

  6. Thank you for the update, and congratulations on getting the good room back!

  7. I have had out of control eczema like something going on with my hands since Dec. They gave me tracrolimus to help in between the days I could use the steroid. The first few days using it my hands burned and itched constantly and I thought I was going insane. I can't imagine having it on my feet too! I'm glad it has calmed down and that you have a good view and long lego shelf! My boys just built hedwig and we can't wait for fawkes to come out!

  8. We’ve been in one of those rooms with a view only of the gravel roof, a sliver of the parking garage, and a giant AC unit. It’s completely demoralizing. I’m so glad you said something and got his old room back! And glad things are going pretty well, despite still being hard. Love you all. 😘

  9. Gosh, that last picture of him he looks so good! Even smiling! Things are really looking up; aren't you so glad for TPN - then they feel better when nourished (no headache, more energy etc.)
    Thanks for sharing! I didn't realize engraftment could thankfully happen so fast! Prayers continue!

  10. Glad Aaron is turning the corner! I ‘m glad he’s able to enjoy building amazing things with his Lego sets again. What a journey you all are on! Glad there is progress! We’re pulling for you!


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