What a Hero Looks Like

Sep 21, 2019

When we told Maxwell that he was Aaron’s bone marrow match, I wanted him to be overjoyed at the prospect of saving his brother’s life. I hoped he would recognize it as an honor and privilege. 

Instead, he was severely disappointed. He wanted the match to be one of his other brothers, not him. He gave Aaron a hug that night but only because we told him to.

When we took him to the hospital the next day, he was snarky and rude. He made it quite clear that this was not his choice.

His most common response to, “Max! That’s so great that you’re a match for Aaron” was an unenthusiastic, “Meh.” 

It probably shouldn’t have been so surprising to me. He is only nine, after all. He couldn’t possibly grasp the full scope of it all or have the maturity of seeing beyond his own fear to the hope of a bright future. In retrospect, I probably should have granted him a little more sympathy.

But as the days passed, he began to rise to the challenge of his own volition. He started to own it.

One afternoon, he came home from school with an invitation to a birthday party. He handed it to me and said, “Don’t worry, Mom. Before I took it, I made sure it wasn’t on Monday. I told him I was going to be busy then.”

On Saturday, two days before the scheduled transplant, Maxwell woke up with a runny nose. I panicked. I knew they wouldn’t be able to go forward with the transplant if it turned into a full blown cold. And when I asked the nurse about it, she confirmed my worst fears: if they had to hold off the transplant, Aaron would have to go through the whole chemo/immunotherapy regimen again.

We did everything we could think of: We loaded Max up with Vitamin C. Our pediatrician recommended taking him off dairy and gluten (and I cut out sugar as well). Max felt like this was a huge sacrifice (even as I reminded him that Aaron was being denied many foods for months, not just two days). We bought him some soy milk to tide him over, and as he poured himself a big glass of it, he said, “Silk is a lifesaver. Like, I literally would not be here without it.”

We turned to our faith as well. Mike and my brother gave Max a blessing, we fasted, and our hearts were drawn out in prayer almost constantly.

When Maxwell woke up on Monday morning, all traces of the cold were miraculously gone. Max had gone to bed in high spirits, and those continued on our drive to the hospital and as we got checked in to same-day surgery (at 5:45 am).

Once we got into the pre-op room, they asked Max to wipe down each body part so that he would be squeaky clean before going back into surgery. Aaron had had to do the same thing the week before when he got his central line placed, but it was far more entertaining with Max. He stuck out his arms and legs with pizzazz and had both Mike and me laughing with his funny commentary. 

Because he was one of the first surgeries of the day, they hadn’t had time to get behind schedule. The anesthesiologist wheeled Maxwell down the hall while having us sign consent forms at the same time. We gave him a hug, and he was smiling as he rode through the double doors.

In my head, I pictured him recovering for a few hours in post-op and then coming up to Aaron’s room around noon. I thought they’d eat lunch together and play some video games. We would read a couple of chapters from Harry Potter (we’re on the fifth book this fall) before the BMT team came in at 4:00 to do the transplant. Max and Aaron would sit side by side on the bed together, sharing the tender moment together.

But as I already wrote, that is not how it all went down.

Maxwell came out of the anesthesia just fine. He was mellow and sweet. His vitals all looked great, and the nurse wheeled him into the recovery room.

He fell asleep for another hour or so, and when he woke up, he was ready to drink some Gatorade and play on the iPad. He burned through several packs of goldfish and was his usual chatty self. 

The nurse gave him some heavy meds for pain and said he would need to be observed for at least an hour following. I waited most of the hour, but towards the end of it, and anxious to get him up to Aaron, I asked him if he was ready to try getting out of bed (I knew they wouldn’t discharge him until he was up and had used the bathroom).  We moved him to a chair, but he immediately started to feel, in his words, “woozy.” He was extremely hot (even though the temperature in the recovery room  was as cold as the refrigerated section at Costco). I helped him get back into bed and stood there with an ice pack against his back.

Thus began the pattern for the next four hours. He would rest, sometimes even take a nap, before he started to eat and drink and act normal again. Then we would try to get him out of bed only to have the same thing happen all over again.

The BMT team said they would push back the transplant in the hopes that Max would be able to join Aaron. I thought we had a good chance of it when, around 4:00, he was fully sitting up in bed and feeling just fine. But once we moved him to the wheelchair, he got that dizzy feeling again. He felt hot and yelled, “Can’t you turn down the temperature?!” He begged to get back in bed and then complained that the headboard was much too low. He started to feel more and more nauseous until he threw up. I called the nurse, and she said she’d get some Zofran started in his IV. Maxwell held out his arm in a pitiful gesture of surrender.

The team came in to check on him, and it was obvious from his moaning and agitation that he wasn’t going anywhere soon. It didn’t make sense to put off the transplant any longer just for ceremony.

Mike’s dad came down to the OR to be with Maxwell, and I went up to Aaron’s room for the transplant.

It was emotionally hard for me to be celebrating with Aaron and family and the team of doctors and nurses while knowing that the person who had made the celebration possible was two floors below us feeling absolutely miserable.

As the team looked over the paperwork before beginning the transplant, the nurse practitioner said, "Wow, your brother was very generous." They said they hoped to get two million cells per kilogram. Maxwell had given them six million. (Since then, we have all complimented him on his "juicy cells.")

We sang "Happy BMT Birthday" to Aaron; he smiled for a couple of photos; and then he curled up against his pillows and was completely out before the nurse even got things hooked up.

But as I watched those bright red cells make their steady progress down the tube to Aaron's body, it was a beautiful sight to me. I'm so glad I had the presence of mind to really watch it and capture it in my memory because it's something I won't ever forget.

Meanwhile, down in post-op, things had been happening. The nurse practitioner greeted me with Maxwell's discharge papers. They had somehow coaxed Max out of bed again, and he had made it into the bathroom, which meant that every box had been checked off and they were kicking him out.

Usually I'm of the opinion that the hospital is over-protective and errs on the side of keeping their patients too long just to make sure that everything is okay. But this time, I felt the opposite. Even though Max's face was creased in discomfort, even though he had to be strapped into the wheelchair so he wouldn't collapse, even though he was holding a barf bag close to his mouth, they were eager to discharge him.

"Come on, let's go see your brother," they said. They wheeled him into Aaron's room, but it was not a hero's welcome. The party had disbanded, the room was quiet, and the recipient was still fast asleep. All that was left of Maxwell's cells was a bag that had been drained dry.

But Max didn't notice. He fell onto the couch and didn't move until it was time for the equally traumatic drive home.

In the days that have followed, I have thought a lot about Maxwell's sacrifice. While he was down with Max in the OR, my father-in-law asked him, "Max, did you ever think you would save your brother's life?"

To which Max responded, "No. And I definitely never thought it would involve so much throwing up. I thought it would be more of a heroic act, like jumping into a stream."

Like Max, sometimes we have a fixed idea of what a hero looks like:

A daring interception.

A noble act.

A crowning victory.

For their story, I thought it would look like this:

But instead it looked like this:

At first I was so disappointed that this was the only photo I got of Aaron and Maxwell together on this day that was supposed to be so special for both of them.

But now I love it. I think it will forever represent what being a hero looks like for me. Max did what needed to be done. He was scared and nervous, and he did it anyway. He jumped into the proverbial stream with both feet, and that one act set everything into motion. He dealt with the consequences as they came--the nausea and hot flashes and pain--because he had already decided to do it.

That is a hero for me. Someone who makes the decision in the first place.

Oh, and P.S., the next day Max came to the hospital, and we finally got our day of fun and celebration, exactly as we'd planned it.

And I even finally got that photo.


  1. What an unbelievable ride you guys are on. I'm thankful to get to read about it and you guys are always in our prayers!

  2. Love the story arc of this hero. :)

  3. Loved reading your account!! Sooo happy for the whole family!!

  4. You described it so well that tears came to my eyes for both of your sons. Keep me up to date on what happens next.

  5. Max really rose to the challenge. What a brave guy. What a hero!

  6. Just sobbed my way through this, a year later. What a year it has been. A heroic start and a miraculous finish. Love you all. ❤️❤️


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