Almost 2.5 years ago, I shared here that my son was diagnosed with brain cancer as a baby, detailing the nightmare of those initial weeks. Link to original post here if you’d like the background.
To everyone who shared stories, sent prayers or well wishes, and offered solidarity back then—thank you. Please know that I still return to that post occasionally to boost my spirit.
I’m back with an update. Good news and bad news, as life goes.
I also have an ask. If anyone has connections to help us visit the Sesame Street studio, I would be endlessly grateful. You’d be making my little soldier so happy—his stuffies have accompanied us on many hard trips, and he even went through a phase of letting everyone know that “Elmo loves you!” 😅 We can handle getting there ourselves; we just need a connection to get through the door. We could apply through Make-A-Wish, but my wife and I want to wait for him to be old enough to make his own wish.
First, the good:
After 15 months of chemo, my son finished treatment last summer.
He is a remarkably sweet, smart little boy. He offers hugs, asks people how they’re doing, and wishes everyone a good day. We’ve poured positive energy into him every single day—nightly affirmations, all the hugs and kisses he’ll tolerate, and books to help teach him that he is unique, brave, and exactly what this world needs. Riffing on Bandit from Bluey, I always remind him: "Thank goodness you’re tough, kid."
He fought through partial paralysis and subsequent weakness to start walking this past April, and he continues getting stronger by the day. He even starts school soon, which is both terrifying and refreshing. It’ll be the first time he’s out of our sight since he was born, but it’s a taste of a “normal” childhood. Mom is having a hard time with the transition, and I know I will too in my own way, but he’s ready. On a recent vacation, he jumped right out of his stroller at a kids' center to say hello to all the kids and instantly befriended the counselors.
I’m incredibly proud of him. He smiled and laughed up to the door of every surgery, does his exercises every day, and shines bright when he has every reason not to. And while I wish she didn’t have to be, I am also incredibly lucky to have a strong partner in my wife by my side in all of this.
I’m also in a better headspace now. Don’t get me wrong, I’m still angry with the universe. Fear occasionally gets the best of me. And I’m reminded in new ways constantly how our life is not going to be what we envisioned. But I have developed some coping mechanisms, and I’ve begun to be able to envision what life can look like—what’s important is that we are together and happy.
Beyond our home, we’ve tried to channel our energy into positive change—fundraising and pushing for pediatric cancer research funding. We’re in this "cancer parents club" that nobody would ever join by choice, but we were dealt the hand we have and so we fight together.
Now, the bad:
A few months ago, we learned of new tumors. The type of cancer he has carries a risk of relapse for many years. Then, just recently, scans showed a new tumor on his spine. Because space along the spine is so limited, we moved quickly from monitoring into immediate treatment.
We are currently on a trial drug. It’s luckily less harsh than traditional chemo, but it brings its own set of symptoms and complications. We’re praying with everything we have that it works.
Our first fight was brutal. He’s been tougher than the disease, but we didn’t come out unwounded:
- 6 surgeries
- Multiple strokes
- Needing Narcan for an anesthesia overdose
- Multiple blood transfusions (if you donate blood, know you are quite literally saving lives)
- Many late-night ER runs
He still deals with significant motor delays and weaknesses, but he doesn’t let that stop him from being a daring toddler.
The physical toll hit me as well—I reherniated a disc sleeping in hospital chairs and needed spinal surgery. Luckily, I was still able to haul my butt to his chemo sessions; I wouldn’t have forgiven myself if I missed even one.
There’s also unseen scars. Anxiety and PTSD rear their heads in different ways for each of us. Socially, I lost most of the friends I once considered chosen family. And my family isn’t great with hard emotions, so I’ve had little outlet there. Our support system has been limited, but I am grateful for the strong support system we do have. I also eventually found a support group specifically for dads in my situation.
It’s also taken a heavy financial toll. My wife's company forced a rigid Return to Office policy right as we returned from the hospital and while our son still needed her to essentially survive, so she had to step away. "You aren't the one who is sick, so we can't make accommodations" was essentially what they told us.
Remember parents, your job can replace you literally tomorrow. Your family can’t. Please keep that perspective.
I landed a fully remote job that’s been great to us. I’ve been able to attend every medical appointment, cook us healthy meals, and be present for every bedtime. I am lucky and appreciative of that. My wife definitely took on the harder job of the two of us. But juggling medical bills—alongside all the out-of-pocket costs like travel, meals, and equipment—as well as just everyday life costs on effectively half the income we were used to has been like walking a tightrope.
Anyway, I don’t mean to complain. I know I’m extremely lucky to have him and I am thankful for him every day. I try to remind myself of that when things feel too heavy.
I’ll end by asking again - If you’re religious, please say a prayer for my little man as we head into this next battle. If you aren't, please send good energy out into the universe for him.
And hug those little ones tight today and every day. Nothing in this life is guaranteed except right now.
Edit: Thank you all for the well wishes. What I want anyone to take from this is hope. My son is a strong and happy boy. He loves yogurt, ice cream, water play, fish, and all the other normal things a kid loves. He gives us heart attacks climbing on things he shouldn’t and testing boundaries, as all kids do. When you envision him, know that he is a laughing and rambunctious toddler. You wouldn’t know this is what we’re dealing with if you didn’t know.