Stories about: Dana-Farber/Boston Children’s Cancer and Blood Disorders Center

When your sons are both diagnosed with cancer

cancer-sons

One day, our 2-year-old son Javon complained about a bit of pain at daycare. It seemed harmless enough. But after a visit to the pediatrician, we ended up in the hospital for emergency surgery. There, they discovered that a mass in his body was causing the pain. “Cancer?” we feared, but it was too early to confirm.

As young, first-time parents, their father and I were unsure where to turn for help. There’s no manual on how to be a parent when you hear the news that your son has been diagnosed with cancer.

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Post cancer, post rotationplasty, teen athlete continues to excel

rotationplasty- Miles playing baseballThe ball leaps off the metal bat with an unmistakable “ping” that denotes good contact. Miles Goldberg runs to first base, from which the 13-year-old will soon contemplate – and safely execute – a steal of second.

Miles is used to transitioning naturally with the seasons from football to hockey to baseball. This year, however, has been different. Every hit, catch, and glide across the ice has had far more meaning to the eighth-grader, who recently completed osteosarcoma treatment at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.

His treatment included a wide resection of his right proximal tibia in June 2015 that resulted in the loss of most of his right leg bones and part of his thigh bone. Miles is able to move more freely on a prosthetic thanks to an innovative surgery called rotationplasty, which is an option for some Dana-Farber/Boston Children’s patients with osteosarcoma whose cancers require very wide surgical resections.

In the procedure, Miles’ lower right leg and foot were rotated and attached to his thigh bone, so his ankle now functions as a new knee joint. The prosthetic leg is modified to slip over his reattached foot, and makes up for the difference in height with his left leg.

“There were several amputation options, but after I watched some videos about how much mobility you have with rotationplasty, and met some people who had it done, I knew it was for me,” says Miles. “I even met a kid who played varsity high school football and baseball after the same surgery.”

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Newborn screening and gene therapy save baby from ‘bubble boy’ disease

Baby with "bubble boy disease" pictured with his family
Levi with his Dad, Phillip, and Colton with his mom, Kala (photo by Amie Van Amberg)

Happy to have given birth in January 2015 to two seemingly healthy boys, Levi and Colton, after an uneventful pregnancy, Kala Looks gave little thought to the routine heel prick of newborn screening. At 23 and 24, she and her husband, Phillip, were high school sweethearts starting a family.

Two weeks later, a Michigan state health official called. Something came up on Levi’s screen. You need to bring him in right away. Three weeks and numerous blood draws later, the Looks had a diagnosis: Severe combined immune deficiency (SCID) — “bubble boy” disease. Levi’s blood had only a few T cells, crucial ingredients of the immune system, and those were likely his mother’s lingering cells. Soon he would have no immune system at all.

That the fraternal twins are now healthy, active toddlers, climbing onto the dining room table and leafing through picture books and starting to talk, is thanks to newborn screening and a pioneering gene therapy trial at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.

Had Levi been born before October 2011, when Michigan began screening all newborns for “bubble boy” disease, he could well have died of overwhelming infection before his first birthday.

Instead, Levi has a functioning immune system after being treated in Boston as part of an international clinical trial of gene therapy for boys born with X-linked SCID. He is one of three boys treated on the trial’s U.S. arm whose disease was picked up by universal newborn screening, now standard in 42 states. Of the other four boys treated at U.S. sites, one from South America was diagnosed at birth, because an older brother had died of the disease. Three boys, from South America or states that didn’t yet have newborn screening, were diagnosed after suffering life-threatening infections that their bodies had trouble shaking.

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Superheroes, super kids in super costumes don’t let cancer stop Halloween

Children from the Jimmy Fund Clinic and their families trick or treat through Dana Farber.
Children from the Jimmy Fund Clinic and their families trick or treat through Dana Farber. Photo courtesy of Sydney Altschuler.

Abby Roxo likes to be unique on Halloween, and today she had unique totally covered.

The 9-year-old from Shrewsbury, Massachusetts, arrived at the outpatient clinic of Dana-Farber/Boston Children’s Cancer and Blood Disorders Center ready for the annual Halloween parade. Wearing a feathery white halo, white shirt and white pants with large black spots, Abby, who made her costume with the help of her sisters, also drew black spots on her cheeks and wore bright red lipstick.

What was she? “Holy cow!” she said.

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