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.
It may be difficult for parents to hear that their child has a chronic illness. When the diagnosis is celiac disease (CD), an autoimmune disorder caused by an intolerance to gluten, there is good news. CD is treatable by changes in diet.
How it works: When food enters the stomach, it’s broken down into tiny digestible particles, which then travel through the small intestine. The small intestine is lined with villi — tiny finger-like projections that absorb nutrients from the food passing through.
In celiac disease, gluten, which is a protein found in wheat, barley, rye and oats, damages the intestine and causes the villi to break down, leaving a flattened lining that can no longer absorb nutrients as effectively.
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. …