It was New Year’s Eve, 2009 that our lives changed forever. I still despise that holiday, probably always will. It will always trigger memories of lying in a hospital bed with my child who was desperately ill, hearing the nurses cheering with children who had been there far longer than we had when the clock struck midnight.
Earlier that day we had gone to the emergency room. My son had been sick for a few weeks, and after short deliberation we decided we couldn’t wait until the doctor’s offices reopened after the holiday.
The day was a whirlwind or tests, nurses, doctors and phone calls, which came to a head when the oncologist walked in with a nurse in tow and a stack of books. He gave us the news we already expected, our son did indeed have leukemia. You see, when the physician’s assistant did the bone marrow biopsy to confirm the diagnosis earlier in the evening the procedure took two tries because Ben’s hip bone had splintered on the first effort as a result of the deterioration of the bone from the cancer wreaking havoc from deep within.
We sat and listened, trying to absorb the enormity of the news this kindly man was delivering. He was experienced at this task, and gifted in softening the blow, but when a Mack truck runs you over, there’s only so much softening to be done.
We learned a new language, of blood counts and transfusions, names of drugs and procedures, and even of toxic diapers from chemotherapy drugs in urine, meaning we had to wear gloves to change our own child’s wet pants. The learning curve is treacherously steep, and failure isn’t an option; before we knew it we were adjusting to it all, speaking a new vernacular, and had adjusted our everyday lives, which were now dedicated to keeping our child alive.
Our kindly oncologist had warned us it would be a fine line between killing the cancer and killing the host, our son, and we had no idea just how fine that line would be. During the treatment Ben endured numerous hospitalizations for complications, which were exacerbated by his pre-existing Down syndrome.
Eventually, at the ripe old age of seven, we gave Ben his last chemo pill about 40 months after we gave his first. I would like to say that was the end of the story, and that it was a happy ending, but Ben still lives with complications of his chemotherapy. His IQ dropped significantly, and he lost the ability to control his bladder and now needs to be catheterized for urine through a stoma surgically placed in his bellybutton. Yet, I know we are the lucky ones. I’m sure that sounds absurd, considering us lucky to have lifelong effects from the cancer that nearly took the life of my child, but at least we’re in the “nearly” category. Too many friends have lost their children to cancer. Yes, we are the lucky ones.