The Adventures of Alex (a story in 2 parts)

Part 1: The Grand Tetons (this story has 35 photos)

This past August, like most years, we hit the road for an epic family trip. We hiked Arches National Park in Utah, drove the Million Dollar Highway in Colorado, stayed in a bizarro AirBnb in Iowa, saw friends and family – just amazing. A major part of the trip was for Alex and me to spend 3 days packing the famed Teton Crest Trail in Grand Tetons National Park. Alex and I have a list of backpacking trips we plan to do over our lifetime, and this was at the absolute top.

It did not disappoint. But I want to talk about what he and I talked about.

So, there are camping trips and then there are backpacking trips. On camping trips, you pack in a few miles, but the real event is about the camping. You sit around the fire. You have coffee in the morning. They’re relaxed. And when Alex and I do camping trips, we get lots of time to chatter away about all kinds of things – friends, Marvel movies, life, school, you name it. 

But a backpacking trip is more about the journey itself. And we usually spend most of our time talking about logistics: where to get water, bear canister management, organizing the campsite. This trip was particularly heavy on the logistics– lots of details to discuss and manage. So that was a lot of what we talked about. 

Then the rest of the conversation space got filled up by the landscape itself. I mean, every 10 minutes we’d come to a field or an overlook or a bluff and just be staggered by how gorgeous it was. Which meant we spent tons of time just talking about how unique and stunning the place was and pointing out things to each other.

Tetons Day 1

Tetons Day 2

Tetons Day 3

However, there was also what wasn’t spoken.

As you probably know, Alex has a tumor in his leg (here’s the full story if you want it). At first we thought it was cancer, but it turned out to be a non-cancerous tumor called a Desmoid tumor. They figured that out in April and told us to do nothing unless it was growing. No action needed until we do another scan in October.

But in June Alex pointed out that it was quite obviously growing. 

So back to the doctors, another scan. Yes, not only had it grown but there was a second tumor in his butt. Action was warranted. Alex underwent a procedure called cryoablation, where they put needles into the his leg and hit the tumor with super cold to freeze out whole chunks of it. In fact, here he is coming out of the anesthesia.

They got 50% of the butt tumor and 30% of the leg tumor. They felt great about the results. Next step was drugs (chemo) to knock it down further – but we could wait until after our trip for that.

And that is what wasn’t said on the packing trip through the Tetons. Alex felt it though. It was weighing on him. I had no idea at the time, but in his head he was contemplating the possibility that this was his last packing trip. I think it gave those views an extra layer of emotion – the boy was considering that he might never get to do something like this again. In some ways maybe he was saying goodbye to backpacking.

In fact, he told me later it was why he went swimming in Sunset Lake. It might have been his last chance to swim in a mountain lake like this, so he crept into that ice-cold water with that in mind.

Part 2: Chemo (this story has 1 photo)

We got home and the next week Alex started a drug called Nexavar. We were warned that most common side effect was a rash on the feet and hands. In fact, they recommended Alex lather up with Eucerin before bed each night (which he did and hated).

For the first few days everything seemed fine. But that Saturday, Shani and I were going to the store when she got a frantic phone call from Alex. His legs were itching wildly. We flipped a U-turn and rushed home. But by the time we got there, he was good. Jack had suggested a cold shower and that had done the trick.

The next day, nothing. Seemed fine. But just to be safe, I stayed home with Alex as Shani dropped Jack off at Fordham alone (which broke my heart a little).

But still no issues – all good.

Labor Day Weekend arrived, and we were going to drive to New York to spend the weekend at my Dad’s house – the first time since COVID. We headed out on Friday afternoon, and as we got in the car, Alex pointed out a small red hive on each of his elbows. No big deal. No itch. We called the doctor – they said keep an eye on it, monitor for fever, and it should be fine. So we kept going. Traffic was heavy so it took us an hour to get through Philly, which is when we noticed that both hives had grown. They’d started as quarter-sized, but now both of them had branched out.

Shani – blessed, brilliant, wonderful Shani – insisted we turn around. Just to be safe. I called my dad to share the bad news, spun the car around, and did the hour of traffic all over again.

We called the doctor again and were told to monitor for fever. 100.7 meant go to the ER. Which happened at about 11:00 that night. We were in the ER until 4:30 AM. No infection, labs were good, and the fever came down. We were in the clear.

But not really.

The rest of Labor Day Weekend was a slow creep. The hives spread. They showed up on his hands and feet. They crept up his wrists. The fever came and went, but stayed low. He felt crummy every evening and went to bed early. The bottoms of his feet started to hurt to the point where just walking down the stairs was painful. He and I played a ton of Lego Marvel Avengers on the Xbox and we kept in touch with the doctor. The instructions were always the same – fever of 100.7 meant ER.

Monday morning he woke up and the rash had spread. Chest, back, legs. And that evening he got a fever that crossed the threshold. We drove him to CHOP in Philly. They admitted him.

OK – ready for the photo?

That’s his back. Shit got real. Fast. That night the rash covered him entirely.

And then the itching came.

OK – deep breath. Here we go.

You’ve experienced itching, right? Poison Ivy, bug bite, athlete’s foot? Then you know how awful it is.

The worst itching you’ve ever experienced wouldn’t even touch this.

It would flare up and take hold of his entire body. His hands, feet, legs, chest. It looked like he was being electrocuted; he would flail around the hospital bed. He would grit his teeth and scream. He would get up and stomp and swirl around the room slapping at his skin.

Nothing they gave him provided any relief. Prescription-strength Benadryl, hydrocortisone – it did nothing. IVs, creams, lotions, ice packs. 

I remember as one flare-up came on, he started crying out: “Dad! Dad! Dad! Dad!” A child begging for his daddy to help him. In fact, I can still kind of hear that in my head. And I stood by helpless to do anything.

In the thick of another bad flare up he stood up and screamed: “It’s not getting any better!” and then he collapsed onto his bed sobbing. I staggered over and buried my face into his back, bawling myself. And I’d like to say it was in support or solidarity, but it wasn’t. It was selfish; watching him was too much to take and I fell apart.

Hoo boy.

It went on like that for three days. He probably slept a total of 6 hours during that span.

Some things did help, though. 

First off, they had an IV opioid that gave him short periods of relief – but they were pretty sparing with that.

We found that bad TV could be a distraction. He and I threw ourselves into Bachelor in Paradise and got so into it we were yelling at the screen and telling the nurses all about the plot twists. The following night, Shani and Alex watched 7 consecutive episodes of Law and Order SVU.

But the biggest difference-maker was Alex himself.

When he was two years old, he couldn’t pronounce the word “cookie.” He would say “coo-tee.” Shani tells the story of listening to Alex in the back of the car trying over and over to say the word right. “Coo-tee! Coo-ka-tee! Coo-TEE! Cook! Cook! Cook-EE!”

I have memories of watching Alex literally will himself to learn how to read. His little eyes were burning into the book as he mouthed syllables. Forcing himself to figure it out.

Alex is driven and deliberate and smart as hell. I watched him deliberately set out to master the itching. He would feel it coming on and force himself to stay in control. It was amazing to watch. He still lost it sometimes, but sometimes he would fight through it.

The itching finally started to recede after three days. Alex slept for 12 hours straight. Then they sent him home the next day.

So…here we are a few weeks later. He’s back at school. In fact, he just blew up the grade curve on his calc test and got 100. The itching and rash are long past. He and I hiked Hawk Mountain last weekend (5.1 miles, 1096 feet). He started a different medicine about a week ago. A few side effects, but nothing bad – although we’re kind of on pins and needles. All three of us are still a bit shaken.

I’ll close by mentioning one last thing that’s helped Alex: he has wonderful friends who love him. Our last evening in the hospital was his 16th birthday. We snuck in two of his best friends, who came in with Swedish fish and potato chips and gummi worms and a cake. Shani and I stepped out to let them hang out, but I already could see Alex sitting up taller and with more color in his skin. I heard them all laughing as we closed the door.

Here’s our list of packing trips.

Oh, and here’s a few photos from the rest of our big trip.

5 thoughts on “The Adventures of Alex (a story in 2 parts)

  1. Wow! You did it again. Letting us into your life and heart. So brave and touching. Our bodies do crazy things. Sounds like love was a big part of the healing.

    Linda Eichengreen

  2. Thank you for sharing the story of your family’s incredible journey, your unique response to hard times, and Alex’s remarkable resilience. Wishing you all much health, happiness, and outdoor adventure. You guys are an inspiration.

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