Thursday, September 3, 2015

Forever changed

"I'm so sorry."

The words coming out of the surgeon's mouth three hours after my infant son went in for a surgery that was supposed to last less than an hour struck me as you would imagine. The next words would change me forever,

"It's cancer."

His apologies were not about my son having cancer, but rather about him assuring me days earlier that I shouldn't worry. That the likelihood of him having cancer was so rare, it wasn't even something to concern myself about.

The next two weeks are a blur. There are memories of dark hospital rooms before being moved to a pediatric oncology unit. There are memories of well-meaning friends and family saying all the wrong things. Memories of his oncologist telling me how to prepare myself for what was to come. 

I do remember, vividly, a conversation with the surgeon the day after the surgery. "We haven't gotten the results back from the lab, but the chances this is rhabdomyosarcoma is so rare, I am sure that isn't it."

And the visit the next day from the oncologist, "it's alveolar rhabdomyosarcoma." In those two days, I had the time to read the information packets the hospital had given me and I knew this was one of the worst pieces of news I could get, but I had already prepared myself for that being the news I would get.

The first day we returned home is still surreal to me. I can remember driving into my driveway, getting the kids out, walking to the porch and thinking. "Oncologist". "Oncologist". "Oncologist."

The sound of the word became very odd to me. "Your son has cancer" began repeating in my head.

"This is the home where your child has cancer." This thought stopped me in my tracks. I didn't want to go in. I was fearful that walking into that house would acknowledge or in some way make true that my son was entering into a fight for his life.

While you have been reading this, a family has been changed with a diagnosis. One out of 285 children will be diagnosed with cancer. Of those, one in five will not survive. Those who do survive often deal with long-term effects, hassles with insurance companies, and an always-present, heightened sense of awareness of changes in their body. For the families of all of the children fortunate not to go through this, it is hard to imagine the reality of childhood cancer. Please seek to learn more about childhood cancer and what you can do to support the research that can help to keep families from being forever changed.

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