Tell me, what is it you plan to do with your one wild and precious life?
--Mary Oliver, "The Summer Day"
This past week while on a family vacation in Little Compton, Rhode Island where we were married almost 12 years ago, we brought our 5-year-old son James into the local hospital to get some blood work done. He just didn't seem able to kick the virus that had been going around at Lego camp before we left. Our normally spirited and highly energetic little boy was pale, fatigued, and cranky. We wanted to rule out anemia or anything more serious like Lyme disease before he was due to start kindergarten the following week. Rather than affirming that this was a standard virus that would run its course (as both of us as well as our awesome pediatrician had assumed), we received a devastating diagnosis that very night. James basically had no immune system left and his blood counts were dangerously low. An hour later, the pediatric oncologists as Hasbro Children's Hospital in Providence confirmed that he had acute b-cell lymphoblastic leukemia, aka "ALL" - a type of cancer of the blood and bone marrow.
This was a totally foreign concept to us. Even the word itself - "leukemia" - is something I still can't quite get my tongue around, let alone my head. It's an ugly, evil-sounding word, and an equally ugly and insidious condition. Like so many cancers, we have no idea where it came from nor how our seemingly perfectly healthy little boy ended up with it - and no one knows, not even the die-hard medical experts. It has been quite a punch in the gut and more. That said, while we are still very much in the initial stages of shock and grief, we also feel very lucky. His prognosis is excellent and this boy is a fighter. Those of you who know James well can certainly attest to that.
While he is confused, scared, desperate to go home, and frankly more than a bit pissed off at this whole new reality, James has been very brave .... and after a number of emergency blood transfusions, an ambulance ride to Boston, a spinal tap, bone marrow biopsy and MRI, he started a 30-day intensive "induction phase" of inpatient chemotherapy at Boston Children's Hospital/Dana Farber on Thursday. Follow up chemotherapy (hopefully mostly outpatient, and hopefully back at home in CA if his immune system is strong enough to fly safely) will last 2-3 years to ensure that no cancer cells return. There is every reason to think that despite many hurdles and a tough road ahead, James will make a full recovery and live a happy and healthy life. That is one hell of a blessing. And though we are in the early days here at the beginning of what has been described to us as a "hellish" path ahead, we are already stronger as a result of this. I have grown immensely as a mother, a partner and a human being - simply by staring this challenge in the face and summoning the courage to move forward with conviction, patience, hope, and uncompromising love.
James's immune system was far too weak to risk getting a life-threatening infection on an airplane back home to CA before starting immediate chemo, and luckily Dana Farber/Boston Children's is the gold standard as far as treatment for childhood cancer. The reality of a bicoastal life for the next month at least has slowly set in. Charlie, Grace and Caty's mother Ellen are heading back home to CA to maintain some normalcy for Grace and help her start school on Wednesday. Charlie will resume work to a large degree back on the other side of the doctor/patient divide - but hopefully get enough time off to fly back and visit as much as possible and help make any tough medical calls that may await. Caty will switch gears work-wise for now and stay bedside until we know what the future entails.
We have been overwhelmed and humbled by the outpouring of love and support from family and friends near and far. So many have already risen to the occasion by offering hugs, housing, meals, attention to Grace, logistical support on both coasts, sound advice, and overall solidarity. Thank you all, and please send thoughts and goodwill in whatever form "prayer" or mindful moments may take for you - we'll take anything we can get. Sending much love back.
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