Bone Marrow Transplant, Take Two

It has been a week of lows, broken up by one really big high. 

Aaron did so well with his first transplant that the nurses were always shocked to find out he was a bone marrow kid. I distinctly remember one day when a nurse came in to help out our assigned nurse. Trying to make polite conversation, I said something like, "Hi, I don't think we've had you before." And he answered, "Well, I'm bone marrow trained, so I'm usually with the really sick kids." He was surprised when I replied, "Aaron actually just had a bone marrow transplant."

Unfortunately, this time it is not difficult to tell that he's a transplant patient. He has been so sick. (And ironically, we've had that same nurse from the above conversation several times this week, so I guess he's right: he takes care of the really sick kids.)

The pre-transplant conditioning that Aaron did this week contained four components, or pillars, as the doctors sometimes refer to them:

1. One day of cyclophosphamide (or cytoxan): a chemotherapy drug used to suppress T-cells

2. Five days of fludarabine (or fludara): another chemotherapy drug, also used to suppress T-cells

3. Three days of anti-thymocyte globulin (ATG): antibodies used to kill T-cells

4. One day of total body irradiation (TBI): used to kill anything that was missed by the other three

Of course this is an overly simplified explanation of what each of these things do, but their overall purpose (at least in Aaron's case) is to suppress and kill the immune system in order to create space in the bone marrow for the new cells and also to prevent rejection of the new graft. For his last transplant, they only did the cyclophosphamide and the ATG, but because it failed, they added in the fludarabine and radiation for this time. 

Most people are well aware of all of the negative side effects associated with chemo, but it was actually the ATG that really knocked Aaron down. He got the first dose of it on Monday and experienced an array of symptoms: low oxygen, fever, chills, a violent cough, and intense nausea and vomiting. (The fact that his nurse finally took her "lunch" at 5:00 shows what kind of day it was.)

The nausea continued throughout Monday night. Neither of us could sleep because there wasn't a break in the cycle of vomit, get a drink, feel feverish, vomit again. Finally around 5:00am, things settled down enough that he could finally get into a deeper sleep. 

That was the worst of the vomiting (he threw up two liters in a fourteen hour period), but the nausea did not go away. He didn't eat anything on Tuesday, and the only reprieve he got came in the form of Benadryl-induced sleep. (I begged for our favorite nurse on Tuesday. Literally begged. It just felt like we needed her in order to survive the week.)

Before he started any of the conditioning, they got him going with anti-nausea meds, but as the nausea intensified, they added more medications to try to combat it: benadryl-phenergan, zofran, zyrexa, scopolamine patch, emend, and ativan (I have no idea which of these are brand versus generic names). 

These came with their own side effects, the most disturbing of these being hallucinations, slow cognition, and poor coordination. Aaron would ask us questions that didn't make sense; he would forget where he was going on the short walk to the bathroom; he would ask Mike why they were starting a movie in the middle because he couldn't remember that they had already watched the first part of it; he would think dreams were real and reality was a dream; it became almost painful to watch him put together his beloved Legos because he was so slow; at one point, he lost an inconsequential Lego piece and he cried for two hours as he tried to find it. 

They determined it was the Ativan causing all of the cognition problems, so they took him off of it. Physical discomfort was more endurable than mental problems. When we asked him about specific details from those three days, he remembered almost none of it. 

The radiation was the final step before Day 0 (transplant day). Out of everything, it was the least intense. It was almost like going on a field trip since Aaron got to leave Primary's and be transported to Huntsman's by hospital van. He was able to lie down for the process, which is not typical for full radiation but was a blessing for him since he felt so sick. The radiation might have contributed to his continued nausea, but by that point, it was impossible to pin it on any one culprit. 

And then there was finally the transplant, a bright spot in an otherwise dark week. 

I had all of these expectations with the first transplant, and almost none of them were realized: Max missed the whole thing because the harvest had taken place that morning and he was still so sick that he couldn't leave recovery. Aaron fell asleep before the cells even reached his body. With the two keys players being out, the rest of us all just kind of stood around. It was very anti-climatic (you can read all of the details here). 

This second transplant was everything the first one was not. The mood was happy, the room was buzzing with energy, the excitement was palpable. 

We received special permission for Max to come to the hospital. When I told him he was going to get to be with Aaron, his face lit up with the brightest smile. They've been so strict with visitors since the start of covid that he didn't have any hope that he was going to get to be there. But being the donor is a pretty big deal, and everyone recognized that and pulled the strings to make it happen. 

Because the bone marrow harvest happened almost two weeks ago, Max felt totally back to normal. He wasn't in pain anymore, and he had regained all of his usual energy. He was so excited that he probably would have bounced into the hospital except that he didn't want to draw any attention to himself since he knew he was basically a stowaway. 

But once we were in the room, his enthusiasm returned. We didn't have an exact time for the transplant, so he and Aaron played a video game while we waited. I had envisioned a similar scene during the first transplant, and it was weird to see it playing out nineteen months later. 

The nurse finished up with all of Aaron's pre-medications (to reduce the chance of a reaction), and at just about that same time, the stem cells arrived in a big barrel.

The team was called, and nurses and techs gathered in the pod outside the room. A nerdy discussion arose about the temperature that the stem cells were stored at. Max started going off about how absolute zero was impossible to achieve, and after stating all of his opinions, Dr. Rayes looked at him and said, "What college do you teach at?" It made me laugh because of course Max was talking about absolute zero. That's just who he is.

A bone marrow transplant is considered a second (or, in this case, third) birthday. So after everyone was assembled, we all began a rousing rendition of "Happy BMT Birthday." A birthday banner and gifts were presented. Aaron leaned back in bed and soaked it all in, and Max sat in the chair next to him wearing the biggest grin. 

Then the barrel was opened and liquid nitrogen fog poured out of it, giving a very dramatic effect. They signed off that the correct cells were going into the right recipient (whew!), and then they quickly thawed the first of two 50 ml bags.

When it had reached room temperature, they hooked it up to Aaron, and then we all watched, mesmerized, as the bright red cells moved rapidly down the tube, closer and closer to Aaron's body. It was a very visual moment. The long tube seemed to represent the many weeks of waiting, and Max's cells looked like they were rushing in to save the day: We're coming, Aaron! We're coming, Aaron! As they made contact, Max gave a squeal. They were in.

We did the same thing with the second bag, watching those life giving cells. I thought I might cry, but there were only smiles. The whole process took about thirty minutes, which was quite a bit faster than last time. Since they started with frozen cells, they had to hook it up differently. All of the spectators left, and then it was just the four of us again. We busted out some ice cream bars--it was a party, after all. 

One thing I was not prepared for was the smell. When the cells were frozen, a preservative was used so that they wouldn't break down or be damaged in any way. I am pretty sensitive to smells, and it was very pungent. It lasted for probably 24 hours after the transplant, and I have to admit it made me feel a little nauseous myself. I felt bad for one of our techs who had to come in and clean up some vomit, and the smell of that plus the preservative made her retch and almost lose it. These techs and nurses are such heroes. 

It would be so nice if the transplant was like an instant cure. Although it definitely marks the start of healing, it is only the first step on a very long road. Aaron felt good for about five hours after the transplant. At about that point, Dr. Rayes poked his head in the room and asked how Aaron was doing. When I responded that he was feeling relatively good, he said, "Enjoy the honeymoon."

Within probably an hour of that foreboding statement, Aaron was back to feeling really miserable. He feels nauseous and sick pretty much all of the time. We haven't had any more relentless periods of vomiting like we did at the beginning of the week, but he throws up several times every day. He has almost no energy at all. He can work on a Lego set for about fifteen minutes before feeling completely wiped out. 

We're in a hospital wing full of really sick kids, so we know it could be much worse, but still, the constant nausea is taxing. However, unlike a month ago when he was just suffering for the sake of it, it now feels like every hard day has a purpose and he's one inch closer to feeling better and being whole.

I compare everything to the first transplant: what medications Aaron got then versus now, how Aaron felt then versus now, what his counts looked like then versus now, the timing of everything then versus now. It drives our doctors crazy, but how can they expect me to do any less? I have a reference point; I have to use it.  

There is a part of me that is secretly hoping that since Aaron is so much sicker this time that this somehow means the transplant will be more successful.

All of the videos I took during Aaron's first transplant were accidentally deleted a few months afterwards. By the time I realized it, it was too late to recover them. It was pretty devastating for me. It wasn't necessarily a pleasant couple of months, but it was life changing, and I wanted a record of it. 

It has felt strange taking videos of all of these experiences again. I never wanted a redo, but since I lost the first videos, that is kind of what it feels like I'm doing--altering the past to make it turn out differently. 

The first transplant will always be special to me. Despite it being less-than-glamorous, there were aspects of that day that felt deeply sacred. Watching Max sacrifice so much for his brother was holy. 

So far, this experience has been different. Some things have been easier; most things have been quite a bit harder. But being in the room with Maxwell, Aaron, and Mike on Day 0, surrounded by a truly supportive medical team all with big smiles on their faces, was absolutely unforgettable. It stood out in sharp contrast to the first Day 0. 

And somehow, it felt like redemption.