In August 2007, our daughter Grace was excited to be starting kindergarten. Lunch box in hand, she was finally going to big kid school like her older sister, and she was determined to not let the erratic headaches she had been experiencing get in her way.
Her headaches seemed like migraines. We never imagined cancer.
On September 20th, just a few short weeks after school began, a neurologist at Rhode Island Hospital identified signs of swelling behind Grace's eyes and problems with her balance. A CT scan in the Hasbro Children’s Hospital emergency room revealed a large tumor in the lower rear of her brain: high risk, malignant medulloblastoma. We were terrified.
Our first night in intensive care, The Tomorrow Fund family embraced us. We met Dr. Doug Harrison, our wonderful pediatric oncologist, who works out of The Tomorrow Fund Clinic at Hasbro Children’s Hospital and has been with us every step of the way. We were supported by social workers, nurses, child life specialists, hospital classroom teachers, and parent advocates - all heroes in our eyes and all connected to or provided by The Tomorrow Fund.
Grace had successful surgery at Hasbro to remove nearly the entire tumor. Within the month that followed, the tumor grew back. At Mass General in
Boston, Grace received thirty treatments of proton radiation therapy, a form of treatment not available in Rhode Island. The Tomorrow Fund provided daily financial support which eased the expenses and stresses associated with traveling, living away from home, and having a family divided. With her skin raw, her hair mostly gone, and her body bone tired from radiation, Grace then began six months of debilitating inpatient chemotherapy treatments at Hasbro, followed by six more months of high dose medication at home.
Now two years from diagnosis, we return to The Tomorrow Fund Clinic every six weeks for blood work or MRIs. Grace has physical therapy and occupational therapy and wears purple and green hearing aids to correct her hearing loss. She is doing amazingly well. Our family is one of the lucky ones as Grace continues to be cancer free and is thriving in first grade. She cries often over having had cancer, but will follow her tears with appreciation for the friends and heroes she has met along the way.
A diagnosis of cancer, especially in children, is a devastating and isolating experience. As the shock has worn off and we slowly adjust to our new normal, we can appreciate more and more the incredible medical care and support we continue to receive from The Tomorrow Fund. They have not only treated us, but helped us to heal, and we are forever grateful.