Tag Archive for ChildhoodCancer

Meet Henry: a cancer survivor who was diagnosed before he was born

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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 a bicycle. Meet the amazing seven-year-old in this video.

Tune into WEEI or NESN to hear Henry live on the WEEI/NESN Jimmy Fund Radio Telethon on August 22, 2012. Henry is scheduled to be on WEEI during the 11 a.m. hour on Wednesday.

 

A cancer survivor at age 9

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In celebration of Living Proof week, Insight honors cancer survivors with daily posts about survivorship.

To look at 9-year-old baseball player and Lego champion Charlie Rider, you’d never guess he’d had cancer for nearly half his life. Read more

Why pediatric survivor programs are so important

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In celebration of Living Proof week, Insight honors cancer survivors with daily posts about survivorship. 

When Dana-Farber launched its David B. Perini, Jr. Quality of Life Clinic nearly 20 years ago, it was one of the nation’s first programs dedicated to helping childhood cancer survivors.

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.

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Therapy dogs bring smiles to kids with cancer

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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.

Pawprints’ Phil even has his own calling card.

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. Read more

A new approach to old ideas about diffuse intrinsic pontine glioma

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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

Two dads, one cause, and a whole lot of love

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Malia Jusczyk and her dad, GlenNo 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.         Read more

Family bonding in the Jimmy Fund Clinic

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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. Read more

Mattel announces hairless version of Barbie doll

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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.” Read more

Cancer treatment and fertility: Planning for the future

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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

Treating childhood cancer worldwide

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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/Boston Children’s Cancer and Blood Disorders 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/Boston Children’s Cancer and Blood Disorders Center, and Dr. Larry Shulman, medical oncologist and chief medical officer of Dana-Farber, who is Senior Oncology Adviser for PIH and leads Dana-Farber/Brigham and Women’s Cancer Center efforts in Rwanda.  Read more