Benjamin’s Story: Certain Moments

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.     

By Alethea Mshar 

Let me first tell you about my son.  Benjamin is a handful.  He is a willful child, facing obstacles with determination and perseverance.  Benjamin was born with a bonus, at least that’s what I like to call it.  He has a bonus 21st chromosome, medically referred to as trisomy 21, commonly referred to as Down syndrome.  We brought Ben home at 3.5 months old in May of 2006 as his adoptive parents, believing that, other than the bonus, he was healthy, strong and had no additional challenges.

Benjamin
Benjamin

Boy, how wrong we were.  Ben came home in May, and by August he was diagnosed as moderately/severely hearing impaired, and by his first birthday his thyroid had failed, he had been hospitalized with RSV, and was failing to thrive, not growing or gaining weight, and falling off the growth charts.   After numerous phone calls, pediatrician and specialist office visits, we got the answer of Hirschsprung’s Disease, and Ben had a surgery to correct that.

Shortly after the surgery, his struggles took on yet another form, and after several hospitalizations, Ben got the diagnosis of Cyclical Vomiting Syndrome.  Once again, we got the situation under control with the help of a team of doctors, and finally, at the age of 2-1/2 years old, Benjamin started thriving, developing in leaps and bounds.  We thoroughly enjoyed this period, having no idea just how short lived it would be.

In late fall of 2009, Ben lost energy, had vague symptoms of malaise, and was just plain grouchy.  That December, we had a family trip planned to Great Wolf Lodge.  Ben had some vomiting symptoms the morning we left, but after some hemming and hawing, we packed up his nausea meds, some Tylenol, and anything else we thought we might need, just figuring it was a cyclical vomiting issue that could be managed.

By the next morning, after spending time on the phone with his pediatricians and specialists, we took him to the local emergency department.  From there, he was sent to the Children’s Hospital near our home, where he stayed for a week with odd complaints which ran the gamut from fever, diarrhea, vomiting, and leg pain.  At one point his white blood cell count was elevated with blasts noted (immature white blood cells, which are the telltale sign of leukemia), but after review by the oncologist, it was determined to be transient leukemia, which is not uncommon in children with Down syndrome.

After finding no real answers, Ben recovered to the point that we all agreed that inpatient care was not necessary, and Ben was discharged on December 21, just in time to celebrate Christmas at home.

The celebration came and went, with Ben showing no real improvement.  His leg still hurt, and he just wasn’t himself.  By New Year’s Eve we were back on the phone and once again ordered to the emergency room.  This time the answers came quickly, even abruptly, and were grim. Ben had blasts in his blood again, but this time there wasn’t much doubt that it was a true leukemia, and by the end of the day the bone marrow biopsy had been completed, and we had our answer.

Benjamin in hospital.
Benjamin in hospital.

Certain moments in life seal themselves in your memory, and that day had several of those moments.  In one of them, a physician’s assistant named Aaron, who because a trusted caregiver throughout the treatment, did the bone marrow biopsy.  Aaron is a young, big, strong, capable man.  When he came to tell me about the biopsy, he was clearly stricken.  He had held out hope for little man, that there was still a chance that the bone marrow biopsy wouldn’t show leukemia.  But when he bored into the bone to get the sample, something he had done countless times, Ben’s bone splintered, a dire sign.  Seeing this professional, so big, so seasoned, so clearly a together person, break his composure when delivering preliminary new to me was simultaneously touching and nearly a breaking experience.

By evening, Ben’s primary oncologist delivered the results in the most astonishingly gentle and uplifting manor.  It’s impossible to convey how such a dire conversation could cement a transparent and trusting relationship which would carry on for nearly six years, but to this day I adore these men who brought compassion and hope in the darkest moment of my child’s life, which had already had plenty of challenging times.

Along the way, there were so many dark and challenging setbacks and difficulties.  Many additional hospitalizations were required, and many setbacks which have yet to be overcome, including a 20 point IQ drop, urinary incontinence, and other difficulties which will likely prove to be lifelong.

Although I’m still not exactly clear on why or how, there is a connection between Down syndrome and leukemia, with higher incidence of both Acute Lymphoblastic Leukemia (the type Ben had) and Acute Myleloid Leukemia.  Children with Down syndrome typically have better than average outcomes with AML, and worse than average outcomes with ALL.  The treatment for a little boy with ALL is automatically 3-1/2 years.

Many of the chemotherapy agents are especially toxic to people with Down syndrome, and the doctors often have to tweak the road map of treatment to avoid toxicity, which can increase odds of relapse and treatment failure.  We were very thankful to be able to contribute to cancer research by participating in clinical trials, and equally grateful to all those who participated in trials in the past, which certainly improved Ben’s outcome.

Alas, Ben is nearly 6 years out from diagnosis, and over two years out from end of therapy.  We are told that relapse at this point it highly unlikely, yet we often struggle with any symptom that appears to coincide with any of his leukemia symptoms.  Our whole family has been traumatized, and though we often go through life in a reasonably normal fashion, so often the fears rear their heads and re-traumatize us, more often than not coming straight out of the blue where they are totally unexpected.

Benjamin's "reasonably normal" family living with the trauma of childhood cancer, which never feels normal.
Benjamin’s “reasonably normal” family living with the trauma of childhood cancer, which never feels normal.

This path has changed everything.  It’s a path I want others to understand without walking it themselves.  My hope is that by raising awareness, we can raise funding, and empower future childhood cancer fighters to a better outcome.

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