Pediatric cancers are the number 1 killer of children in this country after car accidents. According to the Central Brain Tumor Registry of the United States, an estimated 4,200 new cases of childhood primary nonmalignant and malignant brain and central nervous system tumors are expected to be diagnosed in the country during 2012. Most new cases will be in children ages 15 and younger.
It’s no secret that pediatric brain tumors impact every aspect of a family’s life. Jenna’s Rainbow Foundation is an organization that understands a sick child impacts not only the affected family but also a community.
Jenna’s Rainbow Foundation is named after 7-year-old Jenna Kamil, a resident of Tenafly, New Jersey, who died from a brainstem tumor in May 1999. Through successful fundraisers, the organization helps support families in crisis, as well as provide sinformation and referral services, conferences, and unique quality-of-life programs for children and adults.
This past fall, the important work of Jenna’s Rainbow was evident when a hospice asked the foundation to assist a family facing the common financial consequences of having a child with cancer. In this case, 7-year-old Tiara was in her final weeks of life as a result of a malignant brain tumor. As Jenna’s Rainbow works with healthcare teams to identify plans that help families through difficult times, the organization provided just that for Tiara and her family. The support from the foundation allowed Tiara’s loved ones to focus on being together at the end of her life without an additional financial crisis.
Jenna’s Rainbow also funded a teen recreation lounge on the pediatric oncology floor of the Children’s Hospital at Montefiore Medical Center (CHAM). It was the beginning of implementing a sense of community within the hospital environment. The state-of-the-art teen room provides teens with the comfort they require during their ordeal by having a space where they can be “normal teens” engaging in enjoyable activities. The lounge has become the cornerstone for myriad programs at CHAM, many of which are aided by Jenna’s Rainbow. Such programming includes Intensive CHAIR, an annual artist in residence program, Art Cart On Wheels and Library On Wheels.
The not-for-profit builds cohesion among patients and their families through services and programs, such as Jenna’s Corner and Happiness is Camping. Jenna’s Corner is an online community enabling parents, survivors, siblings, professionals and others to gain practical information, support and guidance from one another and some of the nation’s leading medical experts. Happiness is Camping provides an overnight experience in addition to support and educational activities for the entire family.
The best news is the increase of the survival rate. The work continues for children and teens whose lives have evolved around surgeries, chemotherapy and radiation. One exciting initiative is its employment intervention and support program. The goal is to identify job opportunities on par with the disabilities or late effects of pediatric brain tumors.
Jenna’s Rainbow Foundation is hosting its Annual Spring Fair on Sunday, May 20, 12:30-5pm, at Tenafly Middle School, Tenafly. Visitors may enjoy a full day of arts and crafts, inflatable rides, games, pie-eating contests, raffles, music and food. The fair is held rain or shine.
For more information, visit www.jennasrainbow.org.
