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.
|
Today, Josephine would be nine years old, a fourth grader at Our Lady of Mercy Academy in Park Ridge. The empty space between my oldest 13-year-old daughter, Stasia, and my baby, five-year-old, Violet, is a bottomless chasm. Bottomless like the hole in my heart, my broken family. After Josephine died there were four islands—my husband, Stasia, Violet and myself—in our home; four islands existing in their own atmosphere, cloudy, heavy, turbulent and sad, with only energy to pacify oneself without ever venturing to the other. An incredible therapist at Camp Sunshine, in Maine, said to a roomful of bereaved parents, “I often wonder who is taking care of the other children when a child dies, for a parent cannot when filled with such grief.”
Prayers of hope turned to prayers of asking God to take her. Holding your dying child in your arms, bathing her body, preparing her to be taken from home to the basement of a funeral parlor. On October 23, 2011, Josephine earned her angel wings. Josephine went from a vibrant little girl, beginning first grade to ending her journey looking like a concentration camp victim. From the moment Josephine was diagnosed until her death, the support my family received from friends and the community was overwhelming! The entire staff and treatment at the Joseph M. Sanzari Children’s Hospital in Hackensack was topnotch. I was touched every day by the kindness and generous spirits of so many. We made the most of a very difficult year. Our family was given the gift of one more year with our sweet Josephine. Without treatment, she would have died within weeks, if not days of her diagnosis. Living with hope and living with fire under our feet, we made as much magic and joy as we possibly could with Josephine. I am grateful to so many people—friends, family, HUMC, and Josephine… While Josephine was in the hospital, we spoke about the need for an outdoor space for the kids on 5e, the oncology floor. I saw a space, a rooftop that was not being used. Josephine and I planned and created on paper a secret oasis on the 5th floor, which we called “Josephine’s Garden.” Josephine’s death propelled me to realize that magic garden. I worked with an urgency so great that at times I wondered where the energy was coming from. But I was afraid people wouldn’t care if too much time passed. I had to get it done. The resulting space is symbolic of life and a journey. Every element has intent. Nothing was chosen without purpose; everything is symbolic. The overlapping hand-stained orange, blue and brown circles represent fire, water and earth, the elements of life. Josephine loved frogs so we have a whimsical fountain of frogs. The 12-foot hand-hewn pine warrior pole with hand-carved wings and a phosphorous bronze, copper and stainless steel crown represent battle. The scarring, peeling and gouges in the body of the pole represent the scars and suffering endured by Josephine and other children with similar illness-induced “battle” wounds. The children fighting in this battle against cancer are allowed to carve their name in the tree, thus leaving their mark in testimony that they bravely fought the fight against this adversary of cancer. The rock symbolizes stability, Mother Earth and the simple joy of sitting on a piece of Nature grounded to the Earth even as it’s warmed by the celestial sun. On the walls, real slabs of slate invite children to draw upon them. The entire space is intended to bring solace and comfort to the children who fight for their lives. |
|
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.
