Stories about: childhood cancer

Cancer diagnosis can’t shake these first-time parents

In some ways, Katelyn Silva and Joe Lauzon are typical first-time parents. They bombard their newborn son Joey’s doctor with questions:

  • Is it OK to give him Tylenol?
  • Is he taking enough formula?
  • Is green poop OK?

And people they meet are sharing pictures of their son.

20140404_JoeyRadiology-2

The difference is that Katelyn and Joe are asking an oncologist, Suzanne Shusterman, MD, of Dana-Farber/Boston Children’s Cancer and Blood Disorder Center, their questions, and Joey’s baby pictures are x-rays and MRI exams shared among a team of physicians.

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Talking about a new cancer diagnosis with your child

The following information originally appeared on Insight, a blog by Dana-Farber Cancer Institute.

Helping a loved one face cancer is never easy, but the challenge is especially daunting when the patient is your own child. The clinicians at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center work with pediatric cancer patients and their families every day and have experience in helping families approach the subject. Here,  Lisa Diller, MD, Anna Muriel, MD, and Jorge Fernandez, LCSW offer tips for talking with your children about their illness.           

1. Include them in the discussion. For many parents, the natural instinct is to not give their child information about their diagnosis to avoid scaring them. But children can view this protection as exclusion, a feeling that they are not important enough to include in the discussion. It’s also anxiety-provoking in that it creates uncertainties and fears that the situation may be worse than it really is.

2. Find a good time and place. Figure out the best time to talk to your child; maybe in bed, or in the car, or even while doing something fun or active. Whatever feels most comfortable to them. We have resources that can help in the discussion.

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Sweet Care-A-Line

Kezia Fitzgerald told us her story last year, when she was finishing treatment Hodgkin lymphoma and her daughter Saoirse was battling neuroblastoma. Sadly, Saoirse lost her fight last winter. Losing her inspired Kezia and husband Mike to do something to help all cancer patients. (A version of this story originally ran on Vector, Boston Children’s Hospital’s science and innovation blog.)

Saoirse Fitzgerald taking a walk wearing her CareAline wrap. The wrap, designed by her mother, helped keep her central line secure

Over the last year and a half I’ve written 70-plus stories about innovations by doctors, nurses and other staff at Boston Children’s Hospital. I haven’t yet written a story about a patient innovation. But that doesn’t mean that patients and their families aren’t out there innovating.

Case in point: Kezia Fitzgerald saw pretty quickly that there was a problem she might be able to fix. Her daughter Saoirse (pronounced Seer-sha), who had been diagnosed with neuroblastoma, had just had a PICC line put into her arm at Dana-Farber/Children’s Hospital Cancer Center to infuse drugs and fluids. Within a day, Saoirse was tugging at the line, trying to pull off the tape that was keeping it in place. “It was irritating her skin pretty badly,” Kezia says. “She was really uncomfortable.”

Kezia, herself at the time fighting Hodgkin lymphoma (read the family’s story) wanted to make her daughter as comfortable as she could. “I pulled out my sewing machine and some cotton fabric,” Kezia recalls, “and made this little sleeve with a pocket that I thought could hold the line in place without having to tape it to her skin.”

That, in a nutshell, is the origin story of the CareAline, which Kezia and her husband Mike are developing into a product that they hope will make life a little easier for patients young and old with cancer and other chronic illnesses.

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Many faces of childhood cancer

In honor of National Pediatric Cancer Awareness Month, we spent September sharing the stories of four brave children treated at Dana-Farber/Children’s Hospital Cancer Center (DF/CHCC). Each child’s story is different, and all four patients have very unique takes on how being a young cancer survivor has shaped his or her outlook on life.

  • Caitlynne opted for an innovative treatment that turned her ankle into a replacement knee after osteosarcoma took part of her leg. She says have the choice, even though she was very young at the time, has made her a stronger person.
  • Fernando was a star soccer player, but Ewing sarcoma sent him to the sidelines while he received treatment. It was a hard transition, but eventually Fernando says his time away from the field gave him a new appreciation for what really matters in life.
  • Sarah has faced leukemia down not once, but twice, and now knows she has the strength to do whatever she puts her mind to.
  • Steven, overcame bone cancer to become his high school’s valedictorian. He’s currently studying to become a cancer researcher, with the hopes of eventually helping children.
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