A New Friend I Never Met
or, how I wish I were a different kind of "cancer mom"
Hello Friends,
September is National Childhood Cancer Awareness Month. This line, with nothing else, has sat on my computer for a week.
I wanted to arm you with all the information to go into the world and force change. I wanted to write a story about how, when Aiden was diagnosed, I dove into all the research and found the best hospitals and the best doctors. I wanted to tell you that I, with my “mother’s intuition,” knew when to challenge the doctors and demand the right treatments. I wanted to tell you that I put on my superhero cape and saved him, but if you’ve been here for a minute, you know that’s not how it happened.
Sometimes, I wish I was the kind of “cancer mom” who hosted fundraisers or started a foundation. I wish I knew the ins and outs of current research and legislation. But I’m just the kind of “cancer mom” whose kid had cancer, no more, no less. If I’m being honest, I don’t want to know the statistics. In my darkest moments, I will blame myself for not doing more. Maybe if I had seen the signs sooner, pushed harder, or washed my hands more… I spin myself around, only to land in the same place every time. “He never should have had cancer in the first place.” Learning more about the disease that killed my baby feels like looking directly at the sun. It hurts too much.
Instead, I’ll tell you about a dear friend I’ve never met.
One afternoon, I was alone with Aiden in the hospital, mindlessly scrolling Instagram. I noticed a woman I don’t know liked several of my posts. I clicked over to her profile, and it was like seeing a replay of the last three months of my life but in reverse.
First, there is a post where she shares that her daughter has a brain tumor. She thanks her family and friends for their support. She apologized for being unable to return messages and then asked for prayers.
The previous post was from the week before. She shares how she noticed her daughter was shaking, and the docs think it’s cerebral palsy. In the post before this one, the whole family is riding a carousel with big smiles.
I apologized for not returning messages. I posted about not knowing what was going on, and in my last Instagram post before Aiden’s diagnosis, I was happy.
I see that we are in the same hospital. I recognized her as someone I had seen in the halls the day before. She was wide-eyed, talking on the phone. She said, “I don’t know what is going on.” I remember feeling a kinship with this woman, the same way a second-time mom might look at a frazzled first-time mom with her newborn.
We found out about Aiden’s tumor in a local hospital. I was ready to climb the walls, desperate to get the monster inside my boy's beautiful brain out. While we waited for our transfer, I met another mom and her son. Her son was going through chemo. She knew what I was feeling.
She said, "It slows down. You get used to it. It won't always feel like this." She gave me her number. Her face was kind, and her child looked happy. I didn’t believe it would get better, but I was glad to have her there, like a lighthouse in a storm. She didn't push, just smiled as we both crisscrossed the halls.
I wondered if I could be this stranger’s lighthouse.
I sent my new friend a private message to introduce myself. I asked if she’d like to have coffee when we both had the time. She responded almost immediately, thanking me.
Maybe I could help her navigate this system. Aiden’s cancer was rare, but her daughter’s was rare-er and inoperable. In a sick way, this made me feel superior.
It was November fifth. Aiden was recovering from a fungal infection in his lungs, and it felt like we were turning a corner. Like an alcoholic swearing off booze, this time for good, I vowed to be better, to be perfect. I told Nick, “When we get out of this, we are going to do things; live life to its fullest.”
But then, like a car crash in a movie where you don’t see it coming, Aiden died. Unexpected. A slap in the face, and most days, my jaw is still on the floor.
My new friend I’d never met, sent me love and peace. In the weeks following, whenever I shared my grief, she always showed her support.
I continued to follow her journey. She dressed her daughter in pajamas instead of a gown, and I thought about how I should have put Aiden in real clothes more. He was constantly vomiting, so it was easier to keep him in just a diaper; plus, I liked feeling his skin against my own.
She shared that chemo wasn’t working and made desperate pleas for someone somewhere to find treatment for her daughter. I wept at a video of her carrying her daughter out of the hospital with all the nurses and staff lined up with their arms raised and fingers wiggling. I scanned the video for nurses I knew; I wondered if they ever thought of Aiden. I learned later this is called bridging out. It’s what they do when the hospital has no more treatment options for the child, and I got very angry.
Two months to the day after Aiden died, her daughter died too.
You’d think I’d know what to say, but I didn’t.
When Aiden was sick, I consciously chose to share parts of our journey publicly. For one, I wanted to keep friends and family updated, and two, I wanted to capture my thoughts during this time. I didn't share too often, mainly because I couldn’t keep up with the response. But there was also so much unknown. I knew if I shared an update, it would come with hundreds of questions, "what ifs," or worse, unsolicited advice and articles. People sent us articles about how sugar causes cancer and how we should take Aiden to St. Jude or how their friend’s kid had cancer, and do I want their number? These well-meaning friends and family members shared things they heard or studies they saw because they felt as powerless as we did.
I complain about how overwhelming it all was, but you know what they didn’t do? They didn’t share what they learned about AT/RT. I know they Googled. I know they knew what we were up against, and they never said a word, and that is the most beautiful kindness I have ever experienced.
I started following a few kids with AR/RT during Aiden's treatment. I still follow them. Some have passed on, and I compared their deaths with Aiden’s. I’ve been grateful Aiden went quickly, and I didn’t have to witness it, and I’ve been jealous of the peaceful transitions experienced at home holding hands until the last breath. I am furious any of us has to experience this much pain at all.
Some of these kids are thriving. Two started kindergarten kindergarden. Aiden was supposed to start kindergarten this year, and I am ashamed of my resentment.
These are ugly feelings I wish I didn’t have.
A couple of Septembers ago, I shared this on Instagram,
“Atypical Teratoid Rhabdoid Tumor (ATRT) is a primary central nervous system (CNS) tumor. This means it begins in the brain or spinal cord.
ATRTs are all classified as Grade IV tumors. This means they are malignant (cancerous) and fast-growing. There is no stage 1 or "catching it early."
ATRTs are VERY rare. An estimated 58 people are diagnosed per year. The average survival rate is around 32%.
You likely didn't know any of this until now. I didn't know most of it until after Aiden died.
When Aiden's oncologist sat us down and explained Aiden's cancer and our treatment plan, I heard nothing but a checklist of things we needed to do to get him better. Everything else was noise. I had my marching orders; there was no time for Googleing.
I set out to be the best hospital parent I could be. I memorized every inch of Aiden's body. I watched for rashes and fevers; I scrutinized his mood, the number of times he vomited, and what color it was. I looked forward to PT, OT, and Speech because it felt like the one area where I could be effective.
Nick and I exchanged detailed hour-by-hour recreations of how long he slept, what his blood counts were, and what the doctors said, word for word. We talked about our favorite nurses. We talked about what we ate for lunch. We ordered take-out and ate together on an uncomfortable couch while Aiden slept.
After Aiden died, I started to learn about his cancer. I learned about the low survival rates, and how chemotherapy can do so much more damage than hearing loss; I learned that because of his age, he wasn’t eligible for radiation, and that this was a bad thing. There were so many things stacked against him, not the least of which was that because his cancer is so rare, there is so little funding for research. Imagine trying to put together a trial when there are less than 600 people living with the disease?”
There isn’t much room in my heart for these facts and figures anymore. I remember that Aiden’s heart rate was 40 beats per minute after his first surgery and 210 one night while fighting a lung infection. I remember that neurosurgeons do their rounds early. I remember Adivan didn’t stop Aiden from vomiting, but it did make him laugh, and I loved hearing him laugh. I remember he turned pale when his platelets were low and got a rash when they used Tagaderm. I remember that shift change was at 7 a.m. and 7 p.m. and that he died at 2:10 p.m.
I prefer to be the kind of “cancer mom” who coaches you through treatment and tells you all the right things to keep your child alive, but my purpose here is to share a grieving story. To grieve and keep living, though not always a 50/50 split. There are days I survive and days I thrive, and I miss Aiden equally on all of them.
This is where I am today. Thank you for listening.
xoxo,
Emily
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Children's Hospital Los Angeles Neuro-Oncology: this link takes a minute, but it gets there.
Thank you for sharing this honest and vulnerable piece of your heart. So much love to you stranger ♥️
Thank you for this beautiful post. It was hard to read, but impossible not to.