- F
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, and overall solidarity. Because so many others have asked how to support us and if donations would help, we are accepting small donations to help offset some of the unanticipated bi-coastal travel costs, medical bills, and a significant loss of income while we sort out what this means for our family for the next few years. We hope to at least be able to bring him home safely - maybe in the thrill of his very own plane if deemed medically necessary - in 30 days. I am looking forward to the day when I can tuck him into his own bed, kiss his head - temporarily bald or otherwise - and see the light at the other end of this unexpectedly dark and scary tunnel.
James's story follows:
On August 15, 2016, 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 bloodwork 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 make sure he wasn't anemic, and to rule out anything more serious like Lyme disease or the like before he was due to start kindergarten the following week. Instead of affirming that this was a standard virus that would run its course (as both of us and our pediatrician assumed), we received a devastating diagosis that very night. James basically had no immune system left and his blood counts were dangerously low. He was confirmed to have acute b-cell lymphoblastic leukemia - a type of cancer of the blood and bone marrow that affects white blood cells.
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. Like so many cancers, we have no idea where it came from and how this 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, 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 on August 17. 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 make sure no cancerous cells return. There is every reason to think that desite 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, we are already stronger as a result of this. I have grown immensely as a mother 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 was far too immuno-compromised to risk a life threatening infection on an airplane back home 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 headed back home to CA to maintain some normalcy for Grace and help her start school on Wednesday. Charlie will resume work to some degree back on the other side of the doctor/patient divide - but hopefully get enough time free to visit as much as possible and help make any tough medical calls that may await. Caty will switch gears work-wise and stay bedside until we know what the future entails.
Thank you so much for your love and support.
xoxo
Caty & Charlie
Grace & James
James's story follows:
On August 15, 2016, 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 bloodwork 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 make sure he wasn't anemic, and to rule out anything more serious like Lyme disease or the like before he was due to start kindergarten the following week. Instead of affirming that this was a standard virus that would run its course (as both of us and our pediatrician assumed), we received a devastating diagosis that very night. James basically had no immune system left and his blood counts were dangerously low. He was confirmed to have acute b-cell lymphoblastic leukemia - a type of cancer of the blood and bone marrow that affects white blood cells.
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. Like so many cancers, we have no idea where it came from and how this 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, 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 on August 17. 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 make sure no cancerous cells return. There is every reason to think that desite 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, we are already stronger as a result of this. I have grown immensely as a mother 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 was far too immuno-compromised to risk a life threatening infection on an airplane back home 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 headed back home to CA to maintain some normalcy for Grace and help her start school on Wednesday. Charlie will resume work to some degree back on the other side of the doctor/patient divide - but hopefully get enough time free to visit as much as possible and help make any tough medical calls that may await. Caty will switch gears work-wise and stay bedside until we know what the future entails.
Thank you so much for your love and support.
xoxo
Caty & Charlie
Grace & James