Three years ago I laid awake in the middle of the night and searched the internet for another way out. Beau had recently relapsed and his care team said that relapse meant starting over. Another 2 years of chemotherapy, but this time harder and stronger. Possibly radiation, months spent inpatient, a wing and a prayer. Survival rates painfully lower than original diagnosis.
I knew there had to be another way, or at least, I really hoped there was! Two more years of toxic chemo and possible radiation. Two more years of weekly trips to the hospital, our entire life dictated by low counts and nasty side effects. Two more years of our family beaten to a cancer pulp.
I asked our team if there were any other options. Their answer was no.
I took this picture following the call. Taking a picture of yourself crying is weird. But, it is also weird to be on a magnificent beach talking the survival statistics of your firstborn and I figured at some point I’d want to remember the feeling.
We were in Florida, a trip we had taken on a whim after we found out about the possible relapse. We figured if we were going to take a sharp right turn, down the relapse road, the very least we could do was spent the three weeks until relapse treatment started, on some beach, in denial. Talk about fight or flight. We were flying, baby. Relapse scare Thursday, toes in the sand Saturday.
I didn’t write much about that trip. Mostly because, even for a writer, it was hard to find the words when every picture I took was tainted by a complete and utter panic in my throat that screamed, “Don’t let this be the end.”
We settled in for three weeks of pure denial, interrupted only by calls with oncologists planning for next steps and middle of the night google searches on relapse therapy survival stories.
That’s how I found The Emily Whitehead Foundation.
The Emily Whitehead Foundation is a non-profit started by the family of Emily Whitehead who was the first child to receive CAR T therapy. With a mission to find less toxic and more target treatments, they naturally caught my attention.
Our mission is to Activate The Cure® for childhood cancer by raising awareness and funding for innovative childhood cancer treatments that are less toxic and more targeted, such as immunotherapy, and to support families fighting childhood cancer.
They also have an amazing resource on their website to connect patients to clinical trials, the process of which is shockingly complex on your own. I was able to find information about the trial at the Children’s Hospital of Philadelphia that Beau ended up participating in.
It’s crazy, when I think back on it. Beau’s entire path shifted because of an insomnia induced google search. I remember reading through the patient success stories, Warrior Spotlights, and weeping hot tears as I prayed that this could be the way.
Beau, Aug 2022, holding a sign for the Emily Whitehead Foundation article. As of March 2024, he is now, 37 months, CANCER FREE.
Gah, to survive. Let it never stop taking my breath away.
I have written about the Emily Whitehead Foundation many times, specifically about the Believe Ball Gala in 2022, please enjoy reading those posts again:
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