From July 2012 to February 2013, Mary McKernan, then 3, spent more than 100 nights as an inpatient at The Children's Hospital of Philadelphia as she fought — and beat — a brain tumor. Nearly every one of those nights, her mother, Tricia, was with her.
"She wanted me there," says Tricia. She doesn't need to say more.
Taking care of Mary became the top priority for Tricia and Mary's dad, Tom, and CHOP became their home away from their Manayunk home. Their world became the Cancer Center and the oncology unit in the Hospital.
So when nurses encouraged Tricia to take a break and find some time for herself, it wasn't easy. "Every morning, I'd try to go to the Food Court for coffee, and one of the nurses would stay with Mary for 15 or 20 minutes," Tricia remembers. "Some of my friends from work at GlaxoSmithKline who lived in Center City would stop by with breakfast or lunch, and that was so helpful."
Mary's treatment included three stem cell transplants, which required her to stay in an isolation room with only Tricia, Tom and Mary's care team allowed inside. The isolation was necessary to keep Mary away from germs because her immune system was so vulnerable, but Tricia ended up being isolated, too.
"Those weeks when Mary was going through her stem cell transplants were harder," she says. "All of the parents in the isolation unit would support each other; we would stand in the hall between our children's rooms to keep an eye on each other's child so one of us could run and get coffee or food. Then we'd eat together in the hallway since we weren't allowed to bring food into the room because of any possible germs. Even those few minutes of contact, to talk with another adult, were important."
Nurses, social workers and volunteers often would encourage the parent at the bedside to take a break, leave the Hospital or go for a meal, but the advice was ad hoc. Research shows a relationship between caregivers' stress and how seriously ill children adjust to their disease and their quality of life when treatment ends.
Caregivers — parents or guardians — really do help their children recover when they take care of themselves.
With this in mind, CHOP’s family-centered care team worked with nurses from the Cancer Center and the oncology unit to create a resource for parents. The result: Caring for You, a guide with practical advice on how caregivers can take care of themselves while their children are hospitalized or undergoing treatment.
“In addition to giving how-to advice, our idea was to also give parents permission to take care of themselves,” says oncology nurse Cyndi Wildes, BSN, RN, who helped write Caring for You. “When a child has cancer, it’s so stressful for parents. We know it’s important to help them mitigate that stress.”
The guide lists where you can go inside and outside of the Hospital, things you can do and ways to make it happen. There is also a list of online peer support organizations specifically for families with a member who has cancer and also helpful more general websites for caregivers of families facing all kinds of illnesses and conditions.
The McKernan family relied on family and friends to make it through — everything from caring for their 2-year-old son, Thomas, when Tricia and Tom were at CHOP to washing Bunny, Mary’s favorite stuffed animal, every day while she was in isolation. Once a week, Tricia treated herself to a nice meal in University City and a night sleeping in her own bed at home.
Mary, now 4, shows no signs of cancer and only comes to CHOP for checkups. Life has returned to normal. Still, Tricia thinks Caring for You will be a useful resource for families facing lengthy Hospital stays. “It’s full of good ideas and great advice,” she says. “When you’re facing that situation, a seriously ill child, you look for help anywhere you can find it.”
Download a copy of Caring for You.
Date: December 2013