Posts tagged ‘pediatric cancer’
You may know the legend of King Arthur, but chances are you do not know the story of Sir Millard, the evils he faced or the battles he won, even though every year, the new-age knights he has inspired take up his quest to battle pediatric cancer.
Every year, those champions, in the form of 15,000 Penn State student volunteers, fight their battle via year-long fundraising that culminates in THON weekend at Penn State’s Bryce Jordan Center in State College, Pennsylvania. This weekend marks the forty-first annual THON dance marathon.
Sir Millard, a.k.a. Christopher Millard, penned his story called “The Four Diamonds” before he died of cancer at the age of 14 in 1972. He had no way of knowing the legacy he would leave behind.
The day he died at Penn State Milton S. Hershey Medical Center, his parents, Charles and Irma Millard, started the Four Diamonds Fund to raise money to assist pediatric cancer patients and their families with expenses outside those insurance will cover while their children are undergoing treatment.
THON weekend is a celebration of the efforts of the volunteers–joined by their fellow students, Four Diamonds Families, and their many supporters–who dedicate their time to raising money and increasing awareness for pediatric cancer.
It is the largest student-run philanthropy in the world, raising $89 million to date, more than $10 million last year alone. Participants hope to surpass $100 million with this year’s total, which exclusively benefits the Four Diamonds Fund at Penn State Hershey Children’s Hospital. (more…)
It all started with a call to arms—conquer childhood cancer—that hasn’t changed for forty years. When the Four Diamonds Fund first appeared in 1972, there was little chance for a cure and treatment choices were limited. Since its inception, however, Four Diamonds has provided more than 3,200 children and their families touched by cancer the means to fight back.
From Despair to Hope
The vision for the Four Diamonds Fund began during the darkest days of Charles and Irma Millard’s life. In 1970, the couple was visiting Children’s Hospital Boston with their beloved 12-year-old son, Chris, who was being treated for rhabdomyosarcoma of the nasopharynx. There, the Millards discovered the Jimmy Fund, a program that covered all out-of-pocket medical costs for children receiving therapy for cancer at the hospital. “That’s where we came up with the idea to start a fund that would benefit families in central Pennsylvania,” Charles Millard says. “In 1972, on the day Chris died at Penn State Hershey Medical Center, we initiated the Fund.”
For the couple, then living in Elizabethtown, their main goal was to relieve the financial burden that other young families may face during their battle with cancer, while providing support for the best medical care available. “In the first five years, it was slow moving, but we continued to do fundraisers,” Millard says. “We felt really thankful that we had the opportunity to take this negative experience in our lives—the loss of our son—and turn it into something so positive.”
A Place of Healing and Caring
The mission of the Four Diamonds Fund is to conquer childhood cancer by assisting children treated at Penn State Hershey Children’s Hospital and their families by funding superior care, comprehensive support, and pediatric cancer research.
Over the years, the organization has expanded its ability to take care of these desperately ill children. Today, a world-class team of professionals provide comprehensive medical care—including pediatric oncologists, nurse specialists, social workers and child life specialists. Some 100 new patient families benefit from Four Diamonds each year. That support includes getting the cost of all uncovered medical bills paid.
“Drawing on these resources, we are able to provide a level of cancer care, second to none,” says A. Craig Hillemeier, M.D., chair, Department of Pediatrics, at the Children’s Hospital. “If you are treating a child with cancer, you are really treating the whole family, and because of the Four Diamonds Fund, we are able to give a much more complete response to the terrible reality that the child and family experience.”
Eli and Miriam Safrai say the decision to temporarily relocate their family from Jerusalem to Hershey was easy. They knew the trans-global move could represent their best hope of connecting their son Muli (short for “Shmuel”) with cancer treatment that could save his life.
It all began in late 2009, shortly after their son Muli’s first birthday.
“He seemed tired, often complained of a pain in his stomach and was constipated,” Miriam says. Despite these symptoms, Muli’s doctor found no medical problem. When the symptoms persisted, his parents sought a second opinion – and shortly thereafter, Muli was diagnosed with neuroblastoma. A tumor had formed in Muli’s adrenal gland, not far from his kidney.
Apart from tumors of the brain and spinal cord, neuroblastoma is the most common tumor affecting children. Roughly half of all patients who are treated for it recover. But the other half relapse, and when the cancer returns, it’s usually very aggressive and brings a grim prognosis. In fact, relapse neuroblastoma has a five-year survival rate in the single digits.
Immediately after he was diagnosed, Muli entered a vigorous, year-long treatment regimen that included a stem cell transplant, chemotherapy, surgery, radiation and immunotherapy. Muli was declared to be in remission. But within weeks, Eli and Miriam received the news they feared most: the cancer was back, this time in Muli’s arm. After hearing about the various options, Eli and Miriam agreed to more chemotherapy and radiation. The treatment warded off the cancer, but caused a fungal infection that made Muli gravely ill.
After Muli cleared that hurdle, Eli and Miriam – knowing Muli’s cancer was almost definitely going to come back – scoured the Internet for clinical trials that would accept him. However, they found none for neuroblastoma patients in remission. Just as they thought all options had been exhausted, they received encouraging news on an online forum for parents of children with cancer. They learned of a trial taking place nearly 6,000 miles away at Penn State Hershey Children’s Hospital.
After reviewing Muli’s recent scans and other medical records, Ken Lucas, M.D., director of the Pediatric Stem Cell Transplant Program at Penn State Hershey Children’s Hospital, accepted the toddler into the trial. “While by scans we know he was tumor-free, this child most definitely had tumor cells in him to some degree,” Lucas says. “That’s why we enrolled him in this study – because his chances of relapse are so high.”
The trial consists of four, one-month treatment cycles. Each begins with a chemotherapy drug that makes tumor proteins increase on the surface of the tumor cell. The patient is then given a vaccine that targets those proteins. The vaccine is created using the patient’s own white blood cells, which are isolated, modified, and transfused back to the patient.
The Safrais did not put life on hold while living in Hershey. On the contrary, Miriam received her doctorate in medicine from an Israeli university and traveled home to give birth to the couple’s third child, Lechem, during their months-long stay in south central Pennsylvania. Meantime, Eli continued to work toward his Ph.D. in physics. And their daughter, Liam, attended pre-K classes at the Jewish Community Center in Harrisburg.
Along with Muli’s treatments, the Safrais say their top priority was trying to maintain a semblance of family life.
“When Liam [came] home from school each day, we often [tried] to make family time together – by going someplace or seeing something,” Eli says. One such excursion led the family to New York City where they took in the view from the Statue of Liberty. They also enjoyed the Pennsylvania Farm Show, as well as a visit to an Amish farm in Lancaster County.
Muli and his family are now back home in Israel. Lucas and his team will continue to monitor Muli’s condition in conjunction with his caregivers back home. Muli will undergo scans every three to four months to ensure his cancer stays in remission.
Muli is the fourth patient to be enrolled in the cancer vaccine trial. Lucas hopes to enroll a total of fifteen, with an ultimate goal of discerning which patients the vaccine therapy was able to help.
Despite the long odds, his parents are optimistic that Muli will be one of those people.
“We really have a lot of hope,” Miriam says with a reassuring smile. “And for us, just hope is also something good.”
Penn State Hershey Children’s Hospital has once again earned a ranking among the nation’s best children’s hospitals in multiple specialties by U.S. News and World Report. This year, the Children’s Hospital is ranked in orthopaedics (for the second straight year), cancer, and diabetes and endocrinology.
This news serves to affirm for members of the Penn State Hershey community both the quality of the care and the quality of the caring that happens at our Children’s Hospital every day. The daily commitment so many people make to provide vital services to the children and families of our community is what makes recognition like this possible.
This honor belongs to each person involved with the care of our pediatric patients and families — our faculty and staff, our students, our volunteers, our friends, and our supporters.
On behalf of the children and families we serve, thank you and congratulations to all who have made it possible.
In this episode of “Medicine in Blue and White”:
- The incredible connection between one fourteen year old boy — and the thousands of people he has helped over the past forty years.
- Combining aerospace engineering and medical technology to help improve health care in developing countries.
- Never-before-seen-behavior under the microscope that could lead to a cure for some of the most challenging diseases we face.
- And a new way to test for what is — literally — an age-old problem.