Hope Propels the Kellys
/The Boston Globe
Charlotte’s Run, which begins on April 10 at 10 AM at the Granite Grill in Braintree, is all because of Charlotte Rose Kelly. But it is not for her. It’s to raise money to annihilate a disease that this brave but tired four-year-old has been battling for nearly two years.
Charlotte was two-and-a half, when five doctors walked into a room at Children’s Hospital Boston and gave her parents, Patrice and Greg Kelly the incomprehensible news that their beautiful little girl had Stage IV Neuroblastoma, a rare and deadly form of childhood cancer.
Chemotherapy. Surgery. Radiation. Two stem cell transplants. Antibody therapy. Vomiting. Nose bleeds. Shots. Infections. Weight loss. Hearing loss. Constipation. Diarrhea. Sores. Transfusions. Fevers. Pain. And dozens of hospital stays.
This is what Charlotte has endured since June 17, 2009. And this is what her parents have had to watch her endure in the hope that their daughter will survive.
“The doctors are optimistic that our baby will be cured.” Patrice wrote on the hospital’s Care Pages, a web site designed for patients and families to communicate with friends and relatives, the day after learning that the mass she felt on Charlotte’s stomach was a cancerous growth.
Neuroblastoma, they crash-course learned, affects mostly infants and young children; some 650 new cases are diagnosed in the United States each year; and 30% of children, with treatment, survive.
The Kellys hung their hopes on the doctors’ optimism and this 30 percent.
But Charlotte has not been not cured. Despite all her treatments, she’s relapsed and there is no known cure for relapsed neuroblastoma. She has an inoperable tumor in her sinus cavity and her only chance for survival is if she is accepted in a trial study that is experimental. And if the experimental treatment works.
Yet hope continues to propel this family. Hope and prayers and people, visiting, doing, giving, encouraging. Offering rides. Cooking meals. Babysitting. Opening their arms. And their hearts.
Charlotte propels them, too. Her essence. Her smile. The way she pretends to be brave for them.
There’s a plaque hanging above the entrance to the Kelly’s family room. which says, “When life becomes more than you can stand, kneel.”
They have knelt.
They’ve had to crush up pills so toxic that they’ve had to wear gloves and a mask to feed them to their baby.
They’ve had to watch their daughter suffer. And get better. And then get worse. Over and over again.
They’ve had to explain to their boys who are just nine and seven how very, very sick their baby sister is.
They’ve had to watch all three of their children lose their carefree childhood.
Four months after Charlotte was diagnosed, Patrice wrote on the Care Pages site, “I cannot believe I have a child who has cancer...I cannot believe I chat with nurses in their gowns and gloves about mundane things, as they administer chemotherapy into my little girl. I cannot believe I am no longer phased by the bald head, ever thinning eyebrows and approximately 4-6 eyelashes left on each eye.”
All these months of treatment later, she still cannot believe her baby cancer.
It is only because of other people that she and Greg are able to get up every day. Friends and family and coworkers and neighbors and strangers have helped this young family endure the unendurable.
Care Pages have also helped. Reading what people write, knowing that even strangers care. “When I feel like I can’t do it anymore, these words help,” Patrice says.
Charlotte’s Run next Sunday isn’t about finding a cure for Charlotte Kelly. It’s about finding a cure for neuroblastoma, a disease that doesn’t get much funding because it doesn’t affect hundreds of thousand of children.
All money raised will go directly to research and although registration for the run is closed because more than 1,500 people have signed up, the after party, featuring Jim Plunkett, which begins at 11, is wide open.
Charlotte was discharged from Children’s Hospital on March 13. “Only a miracle is going to save her,” her mother says.” I know that miracles are possible but they’re not very probable.”
The Kellys cling to the possible. And they pray.
