HEIDI'S STORY

Josephine Elle Rispoli, born on July 9, 2004;
diagnosed with AT/RT, a highly malignant, rare brain tumor, on September 19, 2010; the brave little child warrior died October 23, 2011. These were Josephine’s important dates. They weren’t her high school graduation, first love, college graduation, first big job, wedding.
On September 19, 2010, my beautiful, sweet Josephine, at the age of six, was diagnosed with AT/RT. I will never forget the night she said to me “mommy my head hurts so much I want hurt myself. We had just been to the pediatrician two days earlier and she told us that everything was fine. Immediately after the frightening diagnosis, Josephine underwent surgery to remove the pressure in her brain. This was the beginning of 12 months of brutal treatment, multiple surgeries, five rounds of high-dose chemotherapy, two back-to-back auto stem cell transplants, and six weeks of daily radiation to her brain and her spine where she had to be intubated every single day. Our doctors told us she had a chance of about 20% and, if she did survive this battle, it would not leave her unscathed. Twelve months of hope and five weeks of knowing that Josephine was dying.
On September 19, 2010, my beautiful, sweet Josephine, at the age of six, was diagnosed with AT/RT. I will never forget the night she said to me “mommy my head hurts so much I want hurt myself. We had just been to the pediatrician two days earlier and she told us that everything was fine. Immediately after the frightening diagnosis, Josephine underwent surgery to remove the pressure in her brain. This was the beginning of 12 months of brutal treatment, multiple surgeries, five rounds of high-dose chemotherapy, two back-to-back auto stem cell transplants, and six weeks of daily radiation to her brain and her spine where she had to be intubated every single day. Our doctors told us she had a chance of about 20% and, if she did survive this battle, it would not leave her unscathed. Twelve months of hope and five weeks of knowing that Josephine was dying.

Every day seven children die of cancer. The sad fact is that less than 4% of all research money used for cancer research goes to kids. There is research “shelved” due to lack of funds. Warren Buffett hit the nail on the head when he said, “money creates change.” Almost every drug Josephine was given was designed for adults. Yet children’s cancers are different than those of adults, and children’s bodies metabolize drugs differently than those of adults. We need money to continue research. We need more than awareness about pediatric cancer. We need action! Our children need a voice!
I am saddened that the burden of this fight seems to fall on the already fragile hearts, minds and souls of the parents of these children who die from pediatric cancer. This is my cry for help on behalf of the children.
The fight against pediatric cancer must be a community effort. Like a thief in the night, cancer strikes at children, slowly stealing their physical beings. You see the change in your child’s eyes as treatment progresses. They don’t sparkle as much or shine as bright; they become darker as the life is sucked out of them from the disease and the treatment.
It can be anyone’s child, anyone’s grandchild, niece, nephew or friend. I am propelled by my fear of losing Josephine completely. I lost her in body but I refuse to let her die. I am propelled by my recently awakened creative desire to communicate, educate and inspire through my art, and I am propelled not to let Josephine’s journey destroy me. Instead, because of Josephine’s death, I have had a rebirth. I am more awake than ever. Not only do I have a responsibility to Josephine to keep her alive and continue her purpose, but I also have a responsibility to share what I have learned. My purpose has been redefined and I must use all of the gifts God has given me to help.
To the many families that have been shattered by cancer, I say: we need to stand up and take action.
I am saddened that the burden of this fight seems to fall on the already fragile hearts, minds and souls of the parents of these children who die from pediatric cancer. This is my cry for help on behalf of the children.
The fight against pediatric cancer must be a community effort. Like a thief in the night, cancer strikes at children, slowly stealing their physical beings. You see the change in your child’s eyes as treatment progresses. They don’t sparkle as much or shine as bright; they become darker as the life is sucked out of them from the disease and the treatment.
It can be anyone’s child, anyone’s grandchild, niece, nephew or friend. I am propelled by my fear of losing Josephine completely. I lost her in body but I refuse to let her die. I am propelled by my recently awakened creative desire to communicate, educate and inspire through my art, and I am propelled not to let Josephine’s journey destroy me. Instead, because of Josephine’s death, I have had a rebirth. I am more awake than ever. Not only do I have a responsibility to Josephine to keep her alive and continue her purpose, but I also have a responsibility to share what I have learned. My purpose has been redefined and I must use all of the gifts God has given me to help.
To the many families that have been shattered by cancer, I say: we need to stand up and take action.