September is National Childhood Cancer Awareness Month. Join us today, September 16, 2009 as CURE Childhood Cancer honors CURE Kid Julia Pinotti. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Julia’s Fund.
Julia Pinotti’s Story:
In 2006, we were your typical family experiencing the joys of raising our 2 year old twin daughters, Julia and Claire. They were growing, learning and changing daily, and we felt content and blessed. Then, over Memorial Day weekend our lives took a sudden and unexpected detour. We were out of town in NY when Julia got sick. Initially we were concerned that everyone in our family would have the stomach bug. Our concern shifted as Julia became more lethargic and could not keep anything down. After calling our pediatrician’s nurse line, we took Julia to the local hospital in east central PA near my parent’s home. It was an exhausting night of x rays, blood draws, IV attempts, etc. By the morning Julia’s situation continued to decline. I mentioned to the pediatrician the possibility of head trauma, since earlier in the week my aunt had fallen while carrying Julia. The CT scan revealed that Julia had hydrocephalus and needed immediate surgery. We decided to transfer to the Children’s Hospital in Philadelphia. I was anxious about the surgery, but thought, once the surgery was complete Julia would be fine. When transport arrived, my heart sank as they informed us that Julia’s condition was too critical, that she might not survive the drive and a helicopter was called. As I climbed aboard the helicopter with my 2 year old daughter in the back, everything felt surreal. When we landed, we were immediately ushered to a room and prepped for surgery to relieve the hydrocephalus. I was beginning to calm again. Then the neurosurgeon said he saw a shadow on the scan, which was probably tumor. I felt the floor give way and panic swept through my body I remember speaking the unthinkable; our daughter might have cancer, she might die.
The next day an MRI was performed. The tumor was on the brain stem, not a favorable location. This made removal impossible and surgery very risky. One week later, Julia had a craniotomy. 3 days later we were told the devastating news, Julia had an AT/RT, one of the rarest, deadliest brain tumors. She was given 6 months to live and less then a 10 % change of survival. Our two options were hospice care or a clinical trial with an incredibly intense protocol of chemotherapy and radiation. A few weeks later we returned to Atlanta and Julia started her 52 weeks of Chemotherapy and 6 weeks of daily radiation. We had many long stays in the hospital and scary moments due to treatment side effects. For 15 months our lives were turned inside out and upside down. We have been left with battle scars that run deep. We are one of the lucky families, we beat the odds. Julia is over 3 years from diagnosis and 2 years off treatment. She is about to start kindergarten with her twin sister. We pray she is healed and lives a very long life, but there is no cure for ATRT. Not yet.
About September & CURE’S Kids Conquer Cancer One Day at a Time:
September is recognized as National Childhood Cancer Awareness Month. This September, CURE Childhood Cancer has committed to raising awareness and raising money to help find a cure for childhood cancer in our lifetime and put an end to this terrible disease through a special program CURE’s Kids Conquer Cancer One Day at a Time!
Please help us in our goal of raising $30,000 in the month of September while honoring special CURE kids each day of the month who have been affected by childhood cancer.
For more information, please click here.
About CURE Childhood Cancer:
Founded in 1975, CURE Childhood Cancer is dedicated to conquering childhood cancer through research, education and support of patients and their families. Since its establishment as a grass-roots organization, CURE has focused its efforts on improving the care, quality of life, and survival rate of children with cancer.
The founders, parents and a dedicated pediatric oncologist, joined forces to support laboratory research that would translate into immediate care for children with cancer.
Since that time, CURE has raised millions of dollars to fund cutting edge research at the Aflac Cancer Center Blood Disorders Service at Children’s Healthcare of Atlanta and Emory University School of Medicine.
Through innovative programming, CURE also provides support for stricken families, providing them comfort and support during their time of devastating need.
Donate to Julia’s Fund
Visit us online at www.curechildhoodcancer.org for more information.