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.
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.
Holding hands, 3-year-old Teaghan Bresnahan and her mom run the length of the lake-front dock. At the dock’s end, Teaghan lets go — and gleefully leaps into the air to land in the water with a satisfying splash.
It may seem a typical summer scene. But for Teaghan, who has been in treatment for acute lymphoblastic leukemia for over a year, it’s particularly poignant. This type of leukemia usually requires two years of treatment. With the first year of more intense therapy now behind her, Teaghan is feeling better and getting a bit more swim time this summer.
Teaghan had always been healthy — in her first two years, her only sickness was a single ear infection. That’s why her parents, Mandy and James, were surprised at her two-year annual check-up to learn her blood levels were off. A second blood test three days later found her levels had worsened. Her pediatrician suspected a virus. That Sunday, however, Teaghan developed petechiae (small red spots caused by bleeding into the skin) and a fever. Teaghan’s doctor sent them straight to the emergency room. That night, May 3, 2015, Teaghan was diagnosed with leukemia. Treatment at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center started immediately. …
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. …