Hilary Olson had no reason to suspect that her daughter Hailey might have a brain tumor.
“Her smile was starting to droop a little, and one of her eyes was a little jumpy,” says the 6-year-old’s mother. “We took her to see a neurologist, and he thought she might have pinched a nerve.
“But when he sent us to Boston Children’s Hospital for an MRI,” she continues, “the radiologists sent us straight down to the emergency room.” Read more
No one would choose the way Glen Jusczyk and Greg Kelly became friends: at the bedsides of their little girls with cancer. Yet these extraordinary circumstances created not just a friendship, but a desire to give back to the place providing their children’s care.
On April 16, these dads, who consider themselves “out of shape,” will run the 116th Boston Marathon® as two of more than 550 runners on the Dana-Farber Marathon Challenge team to raise money for the Claudia Adams Barr Program in Innovative Basic Cancer Research at Dana-Farber.
Jusczyk’s daughter, Malia, was diagnosed with neuroblastoma, a cancer that forms in nerve tissue and mostly affects young children, when she was just 2 years old. The family moved from Orlando, Florida, to Boston shortly after the news so she could be treated in the Neuroblastoma Program at Dana-Farber/Children’s Hospital Cancer Center (DF/CHCC), which provides research and the latest treatments.
“We packed our bags as soon as we could,” recalls Jusczyk. “We have family in the Boston area and we wanted Malia to be at the best cancer center in the world for her disease.” There, Jusczyk met Kelly, whose 5-year-old daughter, Charlotte, was across the hall fighting the same type of cancer. Read more
By Sara Dickison Taylor
When our daughter Emily was diagnosed with leukemia at age 5, we found solace and support from other families facing pediatric cancer at Dana-Farber/Children’s Hospital Cancer Center.
Our visits to Dana-Farber’s Jimmy Fund Clinic became a well-rehearsed play. If it was Friday, it was clinic day. Instead of going to kindergarten or playing with her friends like most 5-year-olds, Emily had her vital signs taken, had blood drawn through her port-a-cath, and received a weekly infusion of chemotherapy, platelets, and blood. It was difficult at times, but making friends with other families going through the exact same thing made it bearable.
It takes a village to help you through a child’s cancer treatment, and that includes other families as well as our clinical care team. The Jimmy Fund Clinic usually schedules appointments so that children come in on the same day each week – giving their patients and families a real sense of continuity. We forged relationships with many other “Friday families.” Seeing familiar faces lifted us up and offered a sense of comfort that was just as important for us parents as for the kids. The clinic became a small community for us – our own village. Read more
Mattel Inc., maker of Barbie dolls, last week announced that it would create a bald version of the popular fashion doll to support people battling cancer.
The announcement came a few months after Beautiful and Bald Barbie, a Facebook group that petitioned Mattel to make a hairless version of the doll, gained mass support online. Their mission was simple:
We would like to see a Beautiful and Bald Barbie made to help young girls who suffer from hair loss due to cancer treatments, alopecia or trichotillomania. Also, for young girls who are having trouble coping with their mother’s hair loss from chemo. Many children have some difficulty accepting their mother, sister, aunt, grandparent or friend going from long-haired to bald.
“A hairless doll could really present a great opportunity for families and medical providers to talk about illness and hair loss with kids facing those issues,” says Cori Liptak, PhD, a psychologist in the Division of Pediatric Psychosocial Services at Dana-Farber/Children’s Hospital Cancer Center. “It could also be an interactive way for some children to express their emotions about their own medical experience.” Read more
Imagine being 22 and having your two biggest fears come true: You have cancer, and your treatment may leave you unable to have children in the future.
While you’re still coming to terms with the diagnosis, you now have to make some major life decisions. Do you want to freeze your eggs? Or should you choose a sperm donor and freeze fertilized eggs instead? Don’t forget to consider your husband’s feelings — even though he isn’t even in your life yet. Read more
On International Childhood Cancer Day, it’s important to remember that global support, research, and treatment are vital to ensuring that children in developing countries have the same chance at survival as their peers in the U.S. Physicians such as Dr. Leslie Lehmann from Dana-Farber/Children’s Hospital Cancer Center travel all over the world to deliver expert, curative care to young patients with cancer. Here is her story.
Rwanda is a tiny country in central Africa with much beauty but few resources. The genocide in 1994 that killed nearly a million people also devastated the health care system. Many people do not receive basic health care services and cancer care was nonexistent. It was impossible to even tell how common cancer was – people would die from a mass, or from bleeding, or infection without ever having a diagnosis.
The country has over 11 million people with not a single physician trained in caring for people with cancer. It’s a very sad situation.
This is beginning to change a bit. Through the Partners in Health (PIH) organization, I became part of a U.S.– Rwandan team led by Sara Stulac, PIH’s director of pediatrics, assembled at the Rwinkwavu hospital with the goal of providing consistent quality care to children with cancer. Sara had lived in Rwanda working at this rural PIH- sponsored hospital for six years. I went to Rwanda with Kathleen Houlahan, a pediatric oncology nurse and nurse director of the Jimmy Fund Clinic at Dana-Farber/Children’s Hospital Cancer Center (DF/CHCC), and Dr. Larry Shulman, medical oncologist and chief medical officer of Dana-Farber, who is the Senior Oncology Adviser for PIH and leads the Dana-Farber/Brigham and Women’s Cancer Center efforts in Rwanda. Read more
By Lawrence Shulman, MD
Dana-Farber, with our partners Brigham and Women’s Hospital and Children’s Hospital Boston, offers patients highly advanced treatments in modern facilities. Our patients also benefit from an excellent staff, clinical research, and extensive resources, and many of them survive cancer to live long and healthy lives.
Is it fair, then, that cancer remains a death sentence elsewhere in the world? In Rwanda, for example, a country of 10 million people, cancer care has been completely unavailable to almost all patients. They die of cancers that could have been cured in Boston.
Dana-Farber/Brigham and Women’s Cancer Center is bringing expertise and resources to countries such as Rwanda, Malawi, and Haiti, in collaboration with Partners in Health (PIH), and with support from the Jeff Gordon Children’s Foundation, the Lance Armstrong Foundation, and Michele and Howard Kessler. Teamwork is critical here; PIH is skilled at delivering health care in very resource-poor places, but lacks specific cancer expertise. We understand cancer, but not how to care for patients in such challenging areas, where much of the infrastructure required for cancer care (such as pathology labs) is missing. By joining forces, we can offer cancer patients of all ages a chance at life.
We’re beginning in the tiny nation of Rwanda, the most densely populated country in Africa and one of the poorest in the world. Our goal is not only to help bring cancer care to individual children and adults, but also to work with the Rwandan ministries in developing the policies and infrastructure needed for this work to take place.
If your son or daughter has been diagnosed with a type of sarcoma – a tumor in connective tissue like muscles or bones – there are many questions: Will my child make a full recovery? What are the immediate and long-term side effects of treatment?
Most parents don’t consider whether their child will face a second cancer later in life.
However, a link between sarcomas and Li-Fraumeni syndrome, a rare condition that raises a person’s risk of developing one or more cancers to as high as 85 percent, has led genetic specialists at Dana-Farber/Children’s Hospital Cancer Center (DF/CHCC) to recommend that all child sarcoma patients be offered genetic counseling for Li-Fraumeni syndrome. Read more
