September is Childhood Cancer Awareness Month

Why Caring for Kids With Cancer Takes A Community

Kids shouldn’t get cancer. They shouldn’t be in a hospital, be sick, have mediports, get multiple infusions, lose their hair and suffer the worst battle of their life before their life even begins. But they do.

Kids get cancer and it happens right here in Southwest Florida.

“This year alone we’ve had several days of diagnosing new cases of cancer back to back. It’s heartbreaking,” said Dr. Emad Salman, VP of Operations and Chief Physician Executive at Golisano Children’s Hospital and practicing pediatric oncologist. “I’ve been a pediatric oncologist for more than 20 years and looking parents in the face and saying, ‘your child has cancer’ never gets easier.”

This year while the world was focused on a pandemic, Golisano has diagnosed 36 children with cancer in the last 6 months. To date, in 2020, 43 families have been diagnosed with childhood cancer at Golisano. This year is expected to be the busiest on record.

Why you ask? Why now?

“It is too early to speculate. There are spikes from time to time,” said Dr. Salman. What we do know, is that we have over 80 children on active cancer treatment at Golisano today. Each child, each family, needs not just the medicine we provide but unconditional support.”

To take care of children with cancer at Golisano Children’s Hospital of SWFL there is an entire team. This is unique and provides care from every angle; it is a multi-disciplinary approach. The team understands that our patients are not a diagnosis but a unique individual with different feelings and needs. The team addresses the needs of the child and family. This includes a psychologist, family educator, child life specialist, technology specialist, music therapist and full time teacher at the hospital, as well as five oncologists and a team of specially trained nurses. There is an outpatient clinic that sees over 400 visits a month and an inpatient unit with 12 beds. This summer those beds were full.

This approach helps not only the child fighting cancer but the entire family. None of this would be possible without help from donors.

Philanthropy is part of the secret to the success of the pediatric cancer and blood disorder program at Golisano. Thanks to the tenacious efforts of Frank Haskell, who 25 years ago, made a promise as part of his daughter’s dying wish, to help kids. When Barbara Haskell lost her battle at age 36 in 1995, a few days later, Barbara’s Friends was born as the pediatric cancer fund at Golisano Children’s Hospital.

Today, Barbara’s Friends celebrates 25 years of fundraising that has helped share over $20 million, helping over 10,000 children with blood disorders and cancer. Thanks to the support of Barbara’s Friends, no child is denied treatment for a family’s inability to pay. The team looks for all possible resources to help pay for medications, and transportation. Barbara’s Friends helps provide gas cards for families to get to and from treatment, meals for the parents when a child is staying overnight so they don’t have to leave their bedside, brick and mortar to provide a state of the art facility, equipment, medical supplies, therapy and staffing – all of this has been made possible by philanthropic support.

When Golisano was built leaders made a commitment to offer the best care close to home. Today the team can offer similar services and treatment protocols as other top centers around the country so that our families don’t have to leave the state and be without their network of friends, family and colleagues who support them. The reality is cancer is cruel. Standard protocol for leukemia treatments often require daily and weekly visits for up to three years or more. If a child needs radiation therapy that can be daily for four to six weeks or more.

“We are also learning that young adults and adolescents need our help. Research is showing that a young adult, diagnosed with a pediatric cancer has a 30% higher survival rate when treated under a pediatric protocol,” said Dr. Salman. To better serve the SWFLcommunity, Golisanonow has an oncologist on staff, specially trained to care for young adults.

Philanthropy is helping to renovate an area to be a lounge on the unit – complete with high-tech gaming and video systems and a coffee bar for these young adults to have their own space. The unit already has playrooms with games and toys for the younger kids. There is a family room with a fridge for patients to bring home cooked meals and heat it up, a pinball machine, and cappuccino machine. Donor dollars helped build this unique unit to not just be a hospital, but a home away from home for the hundreds of visits these families make each year to Golisano.

Pediatric cancer is more hopeful in 2020. Sixty years ago a child diagnosed with cancer had a 10% chance of survival. Today at Golisano, children have an 84% survival rate. That’s higher than the national average. Research is advancing our protocols. Golisano is a member of the Children’s Oncology Group. This prestigious membership allows us to share research and clinical trials and access new information as it becomes available from other top centers of excellence.

With all the advances in treatment more children are surviving pediatric cancers. Every day at Golisano the team is developing new initiatives to care for the patient during treatment and beyond.

“Fertility preservation is very important to all of us,” said Dr. Salman. “We are working on ways to preserve fertility for our older patients. Saving a patient’s life is great, but we also want to make sure we give them the best chance for them to have a family of their own.”

There is a lot of research that is on-going in this area. Fertility preservation can be costly and is not always covered by insurance.“We work with our patients to help make this possible and hope that we will be able to have access to more funding for this program through philanthropy,” said Dr. Salman.

Another advancement is higher education for patients.

“Education is vital for success in life. We’ve created our first scholarship, The Barbara’s Friends Scholarship, will be awarded in the Spring of 2021 to a student who’s battled cancer or a blood disorder to allow them to go to a college of their choice.  This program is relatively new. We excited that we can help provide this and hope to expand the opportunities for more than one child a year,” said Dr. Salman.

As the Children’s hospital continues to grow, new specialists are being added. Pediatric Neurosurgery has been an area where there has been a deficit for years. As the SWFL population continues to grow there are now enough children to support a neurosurgical program.  This means kids with brain tumors will be taken care of right here in SWFL and families will not need to travel hundreds of miles for care. A neurosurgeon will help all children in SWFL in case of an emergency like an accident.

“Mental health is another area we are expanding care in, not only for our HEMOC patients but all children. The brain should be treated like a muscle,” said Dr. Salman. “It needs care and exercise. For any child with a critical illness or life threatening condition, we have to take into account how they are reacting, how their peers are reacting and how we can support the family so they can properly care for their sick child. We are fortunate the Yawkey Foundation and Boston Red Sox continue to provide for a psychologist for any of our pediatric cancer patients, siblings or family members to talk to.”

During Childhood Cancer Awareness month, all September, community leaders including top Lee Health Leaders are letting a cancer survivor shave their heads every Friday morning to raise money and awareness with Clips for Cancer. You can watch that live on the Lee Health Foundation Facebook page or visit https://justgiving.com/campaign/clips2020 to learn more.

“A cancer diagnosis turns the world upside down. It destroys the innocence of childhood but there is hope,” said Dr. Salman. “You don’t just cure a child of cancer – you give them their life back.”

All these “little” things add up to a world of opportunity for SWFL families and children. Barbara’s Friends helps make cancer more bearable by providing the care that goes with the latest medical treatments. “Our team is very hands on and personal and puts the child and their family at the center of everything we do,” Dr. Salman says, adding that “it’s a calling.”

While September celebrates all the survivors and current children fighting in a month of awareness for childhood cancer – the fight is year round, 365 days a year.

“These children are some of the most remarkable people you will ever meet and their spirit is resilient. Thanks to you they have so many things to smile about,” said Dr. Salman.

To learn more BarbarasFriends.org 

9800 S. HealthPark Drive, Suite 405                                                                                          Fort Myers, Florida 33908

www.BarbarasFriends.org

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