We know it’s an ugly word as adults. Now imagine it’s your grandchild or your child. Every day in America 43 children are diagnosed with cancer. The average age is just 6 years old.
This number isn’t just something that’s national or a fancy statistic. It’s real. It’s happening 40 miles away from Naples at Golisano Children’s Hospital of Southwest Florida. Since March 1, there have been 23 new diagnoses of pediatric cancer in local children and young adults at Golisano. 23 kids in four months is a lot. In 2019, for the entire year, there were 49 new diagnoses.
“We don’t know why there are more cases right now,” said Dr. Craig MacArthur, Director of Pediatric Hematology and Oncology at Golisano Children’s Hospital of Southwest Florida. “From time to time there are spikes like this. What we know is we have more children than expected being diagnosed and more families in need of assistance. Their worlds are upside down because of COVID -19 and a loss of jobs, incomes, changes in how their kids go to school and now they have a child with cancer. It’s not an easy pill to swallow for anyone under normal circumstances. These are different times, hard times.”
At Golisano Children’s Hospital there is an entire floor committed to pediatric blood disorders and oncology. This unit, which rivals centers of excellence in other states is in part thanks to 25 years of philanthropic fundraising led by Barbara’s Friends and Frank Haskell. Haskell who’s 90 years old and lives in Fort Myers lost his daughter Barbara to cancer at age 36. Her dying wish was that no child suffers the ills of cancer like she did. Frank and his wife made it their life’s mission to help kids in SWFL.
To date Barbara’s Friends has raised more than $20 million, which has all stayed local, to fund the program taking place on the 5th floor of Golisano. On this floor are a dedicated team of five pediatric oncologists, specially trained nurses, two dedicated child life specialists and a dedicated social worker. Philanthropy and Barbara’s Friends fund additional and necessary resources to support the daily work of caring for kids with cancer including a child psychologist assigned to just hematology and oncology, a hospital school teacher, a music therapist, and technology resource therapist who uses technology to help kids conquer treatment through virtual reality and play.
Currently there are more than 70 kids in SWFL on active oncology treatment. Another 322 local children are in the pediatric after cancer experience program, meaning their cancer is in remission but they are still being monitored and watched for a relapse. All of these children visit The Barbara’s Friends the Pediatric Hematology and Oncology Outpatient Center at Golisano which sees more than 400 visits a month.
The team at Golisano will continue to monitor these children until they are 30 years old. Research shows that any young adult diagnosed with a pediatric cancer has up to a 30% higher rate of survival when treated under pediatric protocols. This new research has led to an expansion of the program to treat young adults and adolescents. Last year there were 7 diagnoses in young adults ages 18-30 at Golisano.
Care close to home is critical for all children but especially those undergoing cancer treatment. Golisano is the regions children’s hospital, serving five counties and seeing over 30,000 children a year. Newly designated as a Children’s Miracle Network Hospital, Golisano, is the only hospital treating pediatric cancer between Tampa and Miami. At minimum, a child diagnosed with leukemia will be in treatment for two to three years, needing regular infusions, weekly visits for blood counts and checkups and will have a series of regular inpatient visits lasting for a week to weeks at a time. There’s also the risk of any fever over 100.4. This means an immediate trip to the hospital for inpatient care to monitor an infection which could be life threatening. With the way Golisano is set up, children with pediatric cancer can simply call the outpatient clinic and are routed directly to the inpatient unit –all on the same floor, bypassing the ER.
“Everything about our unit at Golisano was designed with the child and the best care in mind. Driving two hours to Miami or Tampa for every visit isn’t practical,” says Dr. MacArthur. “We are fortunate to have the funding of Barbara’s Friends which provides us the resources to give our kids every advantage of any other center of excellence. Kids don’t need to travel out of state. We are part of COG (The Children’s Oncology Group) which means we can do the same
clinical trials and have access to the same research and treatment protocols that are globally recognized as the best of the best.”
Cancer takes a toll on the entire family. It’s not uncommon for one parent to lose their job while taking care of a sick child. The routine clinic visits and hospitalizations also take a toll on siblings. Barbara’s Friends helps provides support for the whole family. There is free counseling for any member of the family, meals are provided for the parent while the child is inpatient so they don’t have to leave the bedside. If insurance won’t cover a medication, Barbara’s Friends will. The fund also helps cover basic needs to ensure there is a stable environment for the child at home and in the hospital.
“We take care of more than just the medicine. Right now it’s a lot we are providing. The family’s needs are greater than before with the current pandemic and loss of jobs and incomes and yet we’ve lost about half our philanthropic funding due to canceled events. The challenge is very real. The need is there, cancer didn’t go away because events and the world stopped for a pandemic,” said Dr. Emad Salman, Regional Medical Director for Golisano Children’s Hospital of Southwest Florida and pediatric oncologist.
COVID-19 halted the majority of events and the 25th Anniversary celebration for Barbara’s Friends. In total, losing about half a million dollars of expected funding. “The challenge now is that virtual fundraising doesn’t have the same connection to our mission and lacks that personal human touch. We can tell a story with video but there is something
about meeting a child, talking with their family and connecting at the human level with our team that does make a difference. That’s the reason we used to give tours of our pediatric hematology and oncology floor at Golisano Children’s Hospital. When you see the bright colors, smiles, the way our staff knows every detail about a child and how much of a family we all are, it changes things from being a static hospital to being about the child. It’s always been about the children.” said Dr. Salman.
“This is a very difficult year, said Armando Llechu, Chief Administrative Officer for Golisano Children’s Hospital. All of our programs rely on philanthropic community support. You don’t go into caring for children to make a profit. Kids don’t have jobs or insurance, more than half of the children we treat are underinsured, on Medicaid or have no form of payment. For our young oncology patients, thanks to Barbara’s Friends, no child is denied treatment because of their family’s inability to pay for services.”
Barbara’s Friends has a 25-year history of helping kids with cancer. To date, more than 8,000 children – all local have been served by the program. Overall the survival rate for pediatric cancer at Golisano Children’s Hospital is higher than the national average – 84% vs the national average of 80%.
Barbara’s Friends is the local answer for kids with cancer. If you’d like to learn more or make a donation to help children www.BarbarasFriends.org.