It was New Year’s Eve and my son had been sick for weeks. After seeing doctors and even being admitted to the hospital, we had no plausible answer. But that morning my nearly four-year-old son couldn’t stand up anymore.
I tried calling the doctors he'd been seeing, the ones who couldn’t figure out what was wrong, but the only help they gave was suggesting that we go to the emergency room if we couldn’t wait for the next available appointment 10 days later.
We decided we couldn’t wait.
I didn’t want to pack an overnight bag, but I was trying to hedge my bets. I hoped that by being over prepared I would somehow generate some positive juju that would result in the emergency room doctors finding some random, simple answer that had been overlooked by everyone else for the past several weeks, send us home with a prescription or two for good measure, and we would be free to start the new year off with our family. In my mom-gut I knew that was wishful thinking.
My son has several other health problems and we are no strangers to the emergency room. That morning started off status quo: a quick stop at the triage station and sent back through a maze into a room while making small talk with a medical assistant. It was fairly quiet in the ER that morning, and the doctor rolled into our room in short order. After a brief review of Ben’s symptoms and a cursory examination, labs, an IV, and x-rays of the bum leg were ordered and the wait began.
Normally, once labs are drawn a nurse pokes her head in about a half hour later with a follow-up saying that everything looks pretty normal, but this time a whole entourage arrived. And they were nice. Too nice. Everything else faded from existence as the lead doctor told us about something called blasts in Ben’s blood and threw around words like “oncologist” and “bone marrow biopsy.” The staff positively doted on us, and I recoiled at every kind word and effort to provide comfort. These were not normal for a routine emergency room visit and I so desperately wanted this to be just routine.
A Physician’s Assistant arrived in our ER room, and his tone and demeanor were entirely different from the rest of the staff. Whereas for the emergency room staff this was an unusual case, for this PA, it was just what he did. It couldn’t have been more comforting. He laid out the outline of the day’s plans and made arrangements for Ben to be admitted to the oncology floor.
Arriving on the floor revived the rage in me that railed against this reality. This was not happening to us, childhood cancer only happens to other people! Once we got there, though, we found that this staff, who daily work with childhood cancer, were true superheroes and more than up to the task of caring not only for my son’s body, but our whole devastated family.
The bone marrow biopsy confirmed the news we dreaded and a whole new chapter of our lives began, one in which we never imagined ourselves participating. One that included blood transfusions, head shaving, and for Ben, over three years of chemotherapy.
Ben is now cancer-free, as is the case in his type of Leukemia about 90 percent of the time. Now, instead of focusing on saving our child’s life, we focus on raising awareness of childhood cancer. We realize that we're the lucky ones, but that there are 10 percent who still don’t survive. We realize this because we met them in the treatment clinic, we became friends, and we grieve the recurrence and loss of life with those who started this path with us, just as hopeful and frightened as we were.
I like to consider myself empathetic and compassionate, seeking to put myself into the shoes of others. I've always considered childhood cancer a travesty, a cause worthy of support. Then it happened to my child, still just a preschooler. The travesty had landed on my sweet baby, the cause I considered worthy encompassed our whole lives. Suddenly it wasn’t just a St. Jude’s Children’s Hospital tearjerking commercial, it was our reality. There are no words to adequately convey the devastation of that reality.
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