Theo was diagnosed with pilomyxoid astrocytoma at 5 years old. He has been cancer free for 17 years.
What’s one thing you wish you had known in those first 48 hours?
“That it was okay to be afraid, angry, isolated, guilty, overwhelmed… basically any emotion. I wouldn’t let myself feel any of them because I felt I had to be ‘strong’ for my child and put on a brave face. Because not letting myself experience these emotions and trying to hide them when they surfaced in the first few days set a pattern for doing this for the entire treatment. Which is unhealthy and eventually all those emotions find their way to the surface, even if it’s years later.”
What helped you the most in those first 48 hours?
“Finding a quiet place to be alone. We have a large family and so many people calling and visiting it became overwhelming at times and I find a spot in the hospital that was quiet and generally hidden from everyone. I’m not sure I was ‘allowed’ there, but nobody from the hospital ever told me to leave.”
What is one moment in those first 48 hours that you’ll never forget?
“We were diagnosed and admitted on a Friday and the neurosurgeon we needed to consult with wasn’t available until Monday. Sunday we asked if we could take a walk, and we were assigned a red wagon which is how most cancer kids get around the hospital rather than wheelchairs. As we were walking around the hospital I became very aware that I was now the parent of a ‘red wagon’ kid as we got weepy looks from people we passed. That was an impactful realization.”
If you could go back, what’s one thing you’d tell yourself?
“That it’s a marathon not a sprint. I wanted answers and timelines and it took me awhile to figure out that every next step depends on about twenty other things going right.”
This First 48 story was submitted by Andrea.
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