Helping a loved one face cancer is never easy, but the challenge is especially daunting when the patient is your own child. Our clinicians at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center work with pediatric cancer patients and their families every day. Lisa Diller, MD, Anna Muriel, MD, and Jorge Fernandez, LCSW – offer these 9 tips for talking with your children about their illness.
Steven Clifford is an 18-year-old osteosarcoma survivor. A Boston native, he starts college at the University of California, San Diego this month. This is his story.
Life is made up of many difficult decisions. However, imagine my surprise when I had to make a tough and potentially life changing decision at the young age of 11. Up until then, I just was an average child who couldn’t wait to get out of school to play any sport imaginable with his friends.
For years, researchers have sought an avenue to deliver chemotherapy directly to retinoblastoma tumors – cancers of the retina of the eye, which primarily affect children under age 5. It turns out that the body itself offers just such a route.
As a cancer researcher, Kimberly Stegmaier, MD, says her chosen profession offers “the mystery and excitement of discovery.” And she says the same is true of her passion outside the laboratory: dance.
“It’s a huge hook for me,” she says. Both in scientific research and in working on a dance piece, Stegmaier explains, “You start out testing a hypothesis or an idea, and you don’t know what the results will be. The magic of that unfolding is wonderful.”
Although swollen lymph nodes (also known as swollen glands) are usually a sign of an infection or inflammation, they can, very infrequently, be a sign of cancer or a rare disorder.
Rachael Grace, MD, and Christopher Weldon, MD, PhD, co-directors of Dana-Farber/Boston Children’s Cancer and Blood Disorders Center’s Node Assessment Program in Waltham, Mass., offer the following tips for families worried about “lumps and bumps” in their children.
Every Sunday, the Cutter family holds a Chemofeast. The door to their home is open to any and all who wish to attend. It’s a day full of food, beverages, and a lot of laughter, and 15-year-old Blake Cutter gets to choose the menu. Then on Monday, his mother, Lois, drives him to chemotherapy at Dana-Farber.
Maddie Dillon, 17, did not really understand what cancer was when she was diagnosed at age 8. With the help of Dana-Farber’s Jimmy Fund Clinic, she beat her leukemia, but only briefly. Six months later it came back, and she went through more treatment.
Henry Fenollosa’s problems began before he was born, when he was diagnosed with neuroblastoma. His infancy was was spent largely at Dana-Farber’s Jimmy Fund Clinic, where he received treatment for his disease with his family looking on. Today, Henry’s an active seven-year-old, who loves to show off his lacrosse stickhandling abilities and his skill on … Read more
One of the easiest and most effective ways to help cancer patients is to give blood. There is a constant need for donations, but especially so in the summer when people are on vacation and unable to donate. One pint of blood can save up to two lives, and one platelet donation can save up to three.
The dirt roads in northern Rwanda now lead to a cancer center where patients can receive care for a disease that was, until now, considered a death sentence there. The Butaro Cancer Center of Excellence, which was dedicated on July 18, has allowed Dana-Farber/Brigham and Women’s Cancer Center to extend a helping hand in this tiny, densely populated country in Africa.
The call of the beach is hard to ignore on sunny summer days. Yet many teens and young adults do not follow protection tips when they hit the sand. They remain the most difficult age group to convince that ultraviolet (UV) rays, which come from the sun and indoor tanning venues, can cause cancer.
In celebration of Living Proof week, Insight honors cancer survivors with daily posts about survivorship.
From the beginning, the pediatric survivorship clinic has been guided by clinic director Lisa Diller, MD, who is recognized globally for her contributions to cancer survivorship and pediatric oncology. The Perini clinic has developed resources that help survivors address issues such as the long-term effects of treatment, the risk of second cancers, and the psychological concerns of being a cancer survivor.
With the pitter patter of small feet, Phil makes his way through the halls of Boston Children’s Hospital. He walks with a purpose, boarding the elevator that takes him to the oncology floor for his next appointment.
Phil is a new face in 6 North, the oncology unit at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. A spunky pug mix who knows a trick or two, Phil is one of nine therapy dogs who visit pediatric patients at Boston Children’s Hospital as part of the Pawprints Program. What he lacks in medical credentials and size, he easily makes up for in heart.
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.”
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/Boston Children’s Cancer and Blood Disorders Center, 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.
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/Boston Children’s Cancer and Blood Disorders 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.
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/Boston Children’s Cancer and Blood Disorders Center. “It could also be an interactive way for some children to express their emotions about their own medical experience.”
At age 7, Sophie was treated for a brain tumor at Dana-Farber/Children’s Hospital Cancer Center. As a result of her treatment, she struggled with ongoing fatigue, weakness on her right side, and chronic headaches.
Sophie began her freshman year as one of 2,000 students at a large public high school. Despite support from special education teachers, she struggled with the academic demands of her classes and the overwhelming size of the school. An extremely dedicated student, she spent hours each evening on homework, but she tired easily, which made the headaches worse, and she struggled to get through each school day.
More children than ever are surviving cancer. But some will pay a price in long-term effects. Radiation and chemotherapy for cancers involving the central nervous system (including brain tumors and leukemia) can impair problem-solving, multi-tasking, attention, and memory, putting students at risk for learning difficulties.
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.