(See video at the end)
It was a Saturday afternoon. I was in the living room teaching myself Hallelujah by Leonard Cohen on the guitar. Alex came down.
“Dad. I have this lump.” Then he turned and showed me the back of his right thigh.
A fist-sized blob of flesh was pushing out against his skin. I felt it; it was squishy and moved up and down if I pressed it.
“How long have you had that?”
“A while. At least a month.”
He told me later that when he saw my reaction he got worried. He expected Shani to be nervous, but he expected me to blow it off.
I called Shani down, did some googling, forbade Shani from googling, and then took him to PM Pediatrics. Not so much because I thought it was urgent, but because we were going to worry about it until we saw a doctor.
That doctor wasn’t much help. She said we needed to see our regular pediatrician and get a referral for an ultrasound. And she seemed alarmed. Doctors usually have good poker faces, but I felt her emotions rise when she laid eyes on that lump.
Things went pretty quick from there. Pediatrician Monday. Referred for ultrasound Tuesday. Referred for MRI Wednesday morning. And each step brought another level of fear into the whole thing. Our pediatrician told us she would call as soon as she got the radiologist report from the MRI. She told us to expect it Thursday.
But that Wednesday afternoon, I was on the back porch leading a conference call. Shani popped her head out.
“Come on,” she said, phone to her ear and waving me inside.
“I have to go,” I announced abruptly and closed the laptop.
It was the pediatrician. We sat at the kitchen table; Shani put it on speaker.
I knew from her tone.
I honestly don’t remember what she said, although my heart is racing now just writing about it. I wrote some words down on a piece of paper. Here, check it out.
But whatever words she spoke, what they meant was clear. Alex had cancer.
We hung up the phone just as Alex walked into the kitchen. We told him. I went upstairs and told Jack. And soon we were all upstairs in our beds. Jack was under the covers, stunned. Alex was in his room texting friends. Shani and I sat on our bed and stared at each other. We rotated some. I’d go sit with Jack. Shani would lay with Alex for a while. The only levity was that occasionally the puppy would bound in and demand attention, joyfully oblivious to the situation.
I went downstairs and called my brother. The call went like this…
[Insert 60 seconds of gasping and trying to speak before he finally gets the words out.]
Alex has cancer.
[Insert two full minutes of uncontrolled sobbing.]
Chris said all the right things; he was wonderful as my brother always is. He asked me a bunch of questions, none of which I knew answers to. When we hung up, I decided I wasn’t up for making any more phone calls. He promptly overnighted Alex a care package of bacon and candy.
That evening, Shani’s friend, who is a pediatrician, came over and read through the radiologist report for us and answered our questions.
And I’m fairly sure that night was the worst night of my life.
The next day Alex and Shani went to CHOP (Children’s Hospital of Philadelphia). Our pediatrician had gotten us in to see Dr. Kristy Webber, one of the world’s leading experts on sarcomas. They conferenced me in as well as our friend, Heather. We recorded the conversation and Heather took notes.
Dr. Webber was pretty amazing. She was competent and direct. She spoke in plain language. She listened. She addressed Alex directly.
She told us that the MRI was not conclusive. It could be cancer; it could be something else. She wanted a biopsy and then we would move forward quickly. In the meantime, Alex should exercise and go about his normal life.
So we kinda did that. I told my family after that (through email). We told our jobs. Then a few days later, Shani took Alex in for a biopsy. They laid him on his belly, numbed the area, and then pulled out chunks of the tumor using a giant syringe.
Then more waiting. (I think cancer is mostly about waiting.) Shani and I barely left the house. If we did, we made detailed plans for conferencing each other in if Dr. Webber called with results. We went about our days in a tense fog.
The call was quick. Shani was in the car when it came and it was too fast to conference me in. She called me right after; I was in the car with Alex.
“Dr. Webber said that she wants to run one more test, but from what she sees so far, she is ‘cautiously optimistic‘.”
I felt muscles in my neck and back letting go. I had no idea they were even clenched, but suddenly I was deflating deliciously like a punctured parade float.
“Alex, if you don’t have cancer….Fuuuuuuuucccccck.”
Dr. Webber said she’d get back to us the following Monday or even Tuesday. And I can promise you that during that time, no words have ever been analyzed more exhaustively Tham we analyzed the phrase ‘cautiously optimistic.’
It was actually Thursday when she finally called.
It was not cancer.
Alex has what is called a “Desmoid Tumor.” It is not cancer; it does not spread. And unless it is painful or growing, they don’t do anything. They just leave it. Alex had to have another scan in 3-6 months, but otherwise that was it.
So, funny thing. Alex and I have a list of hikes and backpacking trips in National Parks all over the country. Our plan is to work our way through the list over the years. (You better stay in shape, Dad!) And on our list is to go canoe-camping in Congaree National Park in South Carolina.
We’d planned to go last spring, but we had to cancel due to the pandemic. We’d rescheduled for this April and even put a deposit down on a canoe rental. But the lump screwed all that up. We figured there was no way we could still go. Even if it wasn’t cancer, Alex would still have to have surgery to remove the lump. We’d written off Congaree once again.
But about 5 minutes after we got off the phone hearing the news about the Desmoid Tumor, it hit me. I rushed up the stairs and into Alex’s room.
“Alex! We can still do Congaree!”
And a happy dance followed.
So last Friday we mounted up and drove south. The drive was nine hours. We alternated album choices (Purple Rain, Adele 21, Faith, lots more) and we chattered away about if Jack would get a girlfriend in college, theories about Falcon and Winter Soldier, what it was like living in New York City. We gorged ourselves on luscious blackberries that we had brought. And every time we stopped for gas or to pee on the side of the road, the bright smell of spring got more and more intense.
Our hotel was by a huge mall, so early the next morning I let Alex try driving the car around the massive empty parking lots. At 10:00 we went to get our canoe only to find that the park was flooded (!) which meant canoeing wasn’t possible.
Alex didn’t miss a beat.
“Smoky Mountains National Park is 4 hours away!”
So we shot west as Alex found us a hotel in Tennessee. By 2:30 we were on the trail and did an epic, stunning 13-mile hike that took us well past sundown. He and I are so good at hiking together; it was just terrific.
Sunday morning we gassed up and pointed back north. Alex put on the soundtrack to Hamilton. We cranked it up loud, and we sang out loud to every song as we flew across gorgeous country filled with hills and farms. We even started to cast our family version of Hamilton (I’m George Washington, Alex is Hamilton).
But it was during the song “Dear Theodosia” that I started to feel them. Tendrils of emotion began burrowing across my chest. The song is a duet between Aaron Burr and Hamilton. They’ve both just become fathers and they’re singing their hopes for their newborn children. The lyrics caught me again and again. (“I’ll keep the world safe and sound for you.”) And the reality of the past month started to really sink in. I held it together until “It’s Quiet Uptown.” Hamilton’s son is killed in a duel, and the song is two parents grieving for a dead child. I became acutely conscious of Alex’s physical presence just two feet to my right. The reality of my son. He was right there; I could touch him.
- On the night after we got the initial diagnosis, three times Shani woke me up wracked with uncontrollable sobbing. We wrapped around each other in the dark and she murmured “my baby” over and over.
- On the evening we got the initial diagnosis, Jack Nuckols got in the car and drove. He put it on the New Jersey Turnpike and blasted 100 miles north. I can picture him blaring music and screaming along with it, drowning with emotion. Contemplating the threat to our nuclear family that is the core of his whole world.
- On the day after we learned it wasn’t cancer, my Uncle Bob called me and through gravelly sobs told me it had been “the longest two weeks of his life.”
Because in the darkest moments of this ordeal, when we let it slip in, what we were facing was the possibility of living in a world that didn’t have Alex in it. We were facing the possibility that this boy would grow sicker and thinner and weaker. That he would face debilitating pain and nausea and eventually…let go. This glowing star of a boy, who shines so dazzlingly bright, would begin to dim, and then flicker, and then go out. My son.
But there he was, real, right next to me, signing every word of “Your Obedient Servant.”
I looked out the window to the left and tears just sort of dribbled out.
So, here’s what I’ll say. Two things.
1) No sympathy, please. Accepting sympathy would feel almost dishonest to me. Narcissistic. Ungrateful. Everyone reading this knows someone who didn’t find out it wasn’t cancer 20 days into the process. Send your support there. I actually believe my brother’s response was the appropriate one.
2) Friends. For each of us — Alex, Jack, Shani, and myself — for each of us in different ways, it was friends who carried us. I felt that support every single second of the ordeal. And I come away reminded of what I already knew: That when it comes to love, I am the richest man in the world. Deep and heartfelt thanks to everyone who lent their love and friendship.
Oh. And we’re doing Congaree in November, dammit! Also…I made a little tribute/gratitude video. See below.