Carolyn was diagnosed with reflux in her kidneys at age two. About three months before she was actually diagnosed with Neuroblastoma, she had a nuclear scan to see if the condition had resolved. Her kidneys, bladder, and other organs were visualized on the scan, yet no one saw a tumor.
In January, she'd had a few isolated incidences of vomiting, or a low grade fever that was gone by morning. One morning, she got sick in the car on the way to school. Her father brought her back home and thought her stomach felt hard, so I made an appointment to take her to the doctor the next day. The doctor immediately felt the mass and ordered an MRI for the next morning. By one o’clock p.m., we were walking into a pediatric cancer clinic with the understanding that it was likely Neuroblastoma.
Friends searched the internet and gave us information about Neuroblastoma. I called Dr. Kushner's office, and to my surprise he called me back within a few hours. I scheduled a consult for the week after Carolyn finished her first round of chemo, but had to reschedule when she ended up in the PICU with Strep Viradans Sepsis, SIADH and DIC.
After meeting with Dr. Kushner, I transferred her care to Sloan-Kettering, 250 miles from home. We had to break up our family, leaving my seven year old son in Virginia while we lived at the Ronald McDonald House of New York City for eight months. Her father and I had separated not long before her diagnosis, and he couldn't handle the situation at all. My son ended up living with various friends and family members for about five of the eight months. It was awful for him, and he had problems with separation anxiety for a long time after we came home.
Carolyn went through five rounds of high-dose chemo, an eleven and a half hour surgery, pbsct, fourteen cycles of radiation to her skull and abdomen, fifty six days of 3F8, six rounds of Accutane and five rounds of oral VP-16.
She has been NED since July, 2003.
As a result of treatment , Carolyn has profound high-frequency hearing loss. She wears digital hearing aids, and has an FM system at school, where she is in a hearing-impaired class. She is dyslexic, and has difficulty with her vision which makes it difficult for her to read for sustained periods of time. She has asthma (possibly related to chemo), and is growth hormone deficient (gets a growth hormone shot each night before bed), and is being monitored for ovarian failure. She has neuropathy in her hands that makes writing difficult, and in her feet and legs that is aggravated by cold weather or walking long distances.
Carolyn is one of the happiest people I know. She LOVES to learn, and loves school despite their inability (on many fronts) to address her learning needs. She wants to experience as much as she can in life; she is a Jr. Girl Scout working on her bronze award, she takes viola lessons and ice skating lessons, and participates in Girls on the Run where she has completed three 5k races. She won the local Optimist Club speech competition this year and last, and will compete in the regional tournament at Gallaudet University in April. She wants to make a website for CHILDREN who are cancer survivors. When she grows up, she wants to be a pediatric oncologist in NYC.