An Open Letter to the Kind Folks of the World

On one of the last sunny days before this rainy Maine summer, our 5 year-old daughter Amelia was diagnosed with Acute Lymphoblastic Leukemia – ALL for short. She had been fatigued, cranky, and her lovely complexion grew more sallow with every passing day in the weeks leading up to our frantic tour through three hospitals. We attributed it to end-of-school year burnout, a growth spurt, a lurking virus, even – we hoped – undiscovered diabetes.

The day before ALL became part of our lexicon, Amelia fell in a parking lot. She was holding hands with her little sister, who began to run, as free-spirited toddlers will. Amelia couldn’t keep up. She stumbled to the asphalt and scraped her knee, which began to bleed profusely. It struck me how very thin her blood was, watery and almost completely without color. So when, at one A.M. on Friday, June 5th, a pediatric hematologist/oncologist pulled us out of Amelia’s glass room in the Intensive Care Unit at Maine Medical Center, I knew his opinion before he spoke the words. I had a glimpse of the road before us, paved with spinal taps, a compromised immune system, caustic drugs, frequent hospital stays, surgeries, and hair loss. My little girl had cancer.

As parents of a child stricken with a disease usually reserved for older folks, the hard living, and the genetically predisposed, we have rocketed to the summit of a steep learning curve. We scan lab reports to see the truth within her small body, caress the strands of hair caught in our fingers as drugs begin to work, and experience viscerally the discomfort felt by our daughter with every pound gained on steroids and lost on everything else. Doctors have complimented me on my “sophisticated medical knowledge”, I possess a shelf full of pediatric cancer books, and I can now run IVs – all information that should remain unknown and skills that no parent should ever acquire. And yet, here we are for a minimum of two more years, for what is the alternative?

When life becomes so big, so serious, so quickly by this monstrous disease, everything else within it is touched and altered – sometimes beyond recognition. A broken car transforms from mere inconvenience to the (second) most stressful occasion ever; days and weeks run together into a blur punctuated by chemotherapy appointments; a day planner becomes an obsolete knick knack, replaced by an elaborate schedule of drugs to be administered, replete with notations about potty usage. Hand sanitizer becomes a constant companion, and no one enters my home without answering a barrage of questions regarding the general state of their health and most recent whereabouts. Personal goals are relegated to the status of dust bunnies and work days are lost to the forces of tantrums and sickness. My family’s wildly day-to-day existence is brought down to earth by one thing, though - the support of our family, friends old and new, and the astounding outpouring of generosity and well-wishes from coast to coast.

It is this community of kind souls that I wish to publicly thank today. Because of your gestures and mindfulness, we are able to persevere, to keep our family intact, and to give ourselves over to healing our daughter. While nothing but time can truly restore our family to normalcy (though scars will most certainly remain), every kid that saves their change for Amelia, every card from some church in the Midwest, every phone call and email inquiring as to our wellbeing buoys us up to fill the gas tank once again and face the next round of chemotherapy. There are indeed many good people out there who have chosen not to live an insular life, despite what the media may tell us.

Thank you to the boys that sold peanut butter and fluff sandwiches for Amelia. Thank you to Glen Fitzmaurice and all of the students at Focused Fitness. Thank you to our family and dear friends. Thank you Maine Children’s Cancer Program. Thanks, Jason and Harry. Merci beaucoup, Chefs. Thank you to the folks too numerous to name and those whose names I don’t know. You’ve all made a difference in the lives of a little girl and her family, altered my worldview, and made our community a better place to live.

With Gratitude,

Jennifer Betit