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.


  1. I read this aloud to Clara just now and we both cried. We love you all and continue to pray for the transplant to be successful and your spirits to be continually lifted. xo

  2. Whenever David says the prayer he prays, "And please bless Aaron...a lot." My kids understand how important you and your family are to me and they always remember to pray for Aaron. -Bethy

  3. Amy, thank you for so much detail—good and bad—on the boys, as well as your own feelings. We are amazed at their bravery and positive attitude, and we are so glad Max did much better in his procedure this time.
    And your yard looks absolutely incredible, btw!! We assume Mike did the tree extractions, and so very well! We were out of town until Friday afternoon, and we were amazed to look at your yard on Saturday!

  4. I loved the Max quotes and laughed out loud. I also am in tears thinking of your separation and Aaron’s inability to eat take out. Thanks for writing—it is so well done. I line the castle! What a perfect activity for them.

  5. Good look Aaron! And Maxwell sounds hilarious.

  6. My heart. 💔 Full to bursting with joy, pride, love for these boys I get to call family...and also breaking that they have to do this at all. Love you deep.

  7. You have such sweet boys! Love Max's sense of humor and good attitude! Love reading your account and knowing exactly what you're all going through! Hugs, and nightly prayers continue!!


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