Before he was diagnosed with neuroblastoma in 2014 at the age of 11, Noah Smith was a veteran of the children’s theater stage. The suburban Boston boy had been cast in ensembles. He’d played Kurt Von Trapp in “The Sound of Music.”
Little did Noah know that he would soon star in a video designed to allay the fears of children facing radioactive medication delivered intravenously in a lead-lined room where they’d live, under restrictions, for a week. After he received the medication, his parents would only be able to visit him one at a time, standing behind a lead shield and unable to touch him. Nurses would limit their time in his room, entering briefly to check vital signs. Parents and nurses alike would wear badges to monitor their exposure to the radioactive child in the bed.
Add to this the fact that most children who get the cancer that originates in nerve cells are under 5 and it’s easy to understand the anxiety these young patients and their families might feel anticipating MIBG (metaiodobenzylguanidine) therapy. …
After Lacey Martin’s leukemia didn’t respond to initial rounds of chemotherapy and after she spent 10 weeks hospitalized for a stem cell transplant, the 11-year-old New Hampshire girl went home March 2 with an external line for medications that her mother would have to flush and clean twice a day. Lacey’s immune system and infection-fighting ability were so weakened from her treatment that she was under isolation precautions for six months after she left the hospital. Any bloodstream infection contracted through the line, which exited her chest, would be serious and potentially life-threatening.
It is terrifying knowing your child is so susceptible to bacteria and infection and you’re doing it in the house, with kids running around and the dog. I needed to know how to do it right, and I needed to know I could do it.
Caring for a child’s central line at home is, to say the least, a daunting responsibility.
“It’s extremely scary,” says Crystal Martin, Lacey’s mother. “It is terrifying knowing your child is so susceptible to bacteria and infection and you’re doing it in the house, with kids running around and the dog. I needed to know how to do it right, and I needed to know I could do it.”
This is the frontier of efforts to improve the quality of care. With more and more complex tasks moving from the hospital ward to the home, improving inpatient safety and quality of care is only the first step. After collaborating with other pediatric oncology programs to successfully reduce inpatient central-line-associated bloodstream infections (CLABSIs), Dana-Farber/Boston Children’s Cancer and Blood Disorders Center has now launched an initiative to reduce outpatient CLABSIs.
The Martins are among the first families to participate.
Jessica Madsen wasn’t sure if her daughter, Addy, was ready for karate, until the 4-year-old got the chance to take free lessons in the most surprising place:
Her hospital room.
Addy and other stem cell transplant recipients at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center are offered free martial arts coaching during their inpatient recovery through an innovative program called Kids Kicking Cancer. Married black belt instructors Joe and Cathy Esposito visit the pediatric transplant unit at Boston Children’s Hospital every other Saturday, letting patients observe and try various kicks, punches and blocks. In addition to safe workouts tailored to their age and health restrictions — body-to-body contact is prohibited and moves can be performed from bed — the students learn breathing techniques to better manage the fear and pain of treatment.
More than 30 patients and their visiting siblings have taken lessons since the program was first piloted at Dana-Farber/Boston Children’s last September. Instruction is currently limited to transplant recipients, who caregivers feel can especially benefit from the sessions.
“Due to their weakened immune systems, transplant patients need to be isolated from other kids and can’t go to the many group programs we run,” says Mary Malley, a child life specialist in Hematology/Oncology who is overseeing the program with her Dana-Farber/Boston Children’s colleague, Community Resource Coordinator Abby Brown. “This offers them fun, healthy, social interaction and a chance to become more empowered against their disease.”
Kids Kicking Cancer was founded in 1999 just outside Detroit, Michigan, by Elimelech Goldberg, an orthodox rabbi and first-degree black belt in Choi Kwang Do. After he and his wife, Ruthie, lost their 2-year-old daughter, Sara, to leukemia, “Rabbi G” discovered that the same techniques used to withstand pain in martial arts could help children with cancer. The program is now offered to more than 2,600 pediatric patients annually throughout the U.S. as well as in Canada, Israel and Italy.
Caregivers can already see the benefit at Dana-Farber/Boston Children’s. Each Thursday before the Espositos visit, child life specialists gauge interest. There are plenty of repeat participants. …
On September 24, 2015, in a sixth floor room at Boston Children’s Hospital, 5-year-old Logan Lesselroth pressed the button that started the transfer of his newly harvested blood stem cells to his 3-year-old sister, Gianna.
“This,” Gianna told him, “is a gift from your body.”
The path to that moment and the stem cell transplant’s potential to cure Gianna of her relapsed leukemia was anything but straightforward. Logan has a genetic condition called medium-chain acyl-CoA dehydrogenase deficiency (MCADD), which makes it difficult for his body to convert sugar to energy. Would his metabolic disorder be passed to Gianna? Would the disorder make it too risky for Logan to have his stem cells harvested?
Diagnosed with acute lymphoblastic leukemia at the age of 4½ months, Gianna achieved a remission that lasted two years. In May 2015, the leukemia was back. With that, Mike and Marissa Lesselroth sought options for their daughter in their home state of Florida and beyond. “We talked to her doctors in Florida, and they agreed that coming to Dana-Farber/Boston Children’s was the best choice for Gianna because they offered a lot of treatment options for relapsed leukemia,” Mike says. …