Leukemia and Massage Therapy: Johanna’s Story

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When her daughter, Johanna, was being treated for leukemia at Children’s Hospital of Philadelphia (CHOP), Gina experienced an example of above-and-beyond care that stuck with her. 

Johanna Johanna, then 2, received chemotherapy at CHOP’s Specialty Care & Surgery Center in Voorhees, N.J. Gina noticed that massage therapy was being offered to the kids there as they waited, and she saw how it calmed them. She also heard from the nurses and doctors how the young patients reacted to their procedure or treatment after receiving massage therapy.

“They were more relaxed during procedures if they had had the massage,” she says. “It truly made a noticeable difference. And it wasn’t just benefitting the kids. They would ask the parents if they wanted a hand or neck massage. One day they did my hands, and it was wonderful. It made me feel human again. When your child is sick, you’re not really in control. That personal, loving touch really helped make a tough situation more bearable.”

Then the massage therapist stopped coming to the Specialty Care Center. Gina learned it had been a pilot program for a limited time and funding wasn’t available to continue it. She started asking questions and talking to people to find out how massage could be brought back — not just at Voorhees, but at the Main Campus in Philadelphia and at CHOP’s other satellite locations.

Effective parent advocate for massage therapy

She found people at CHOP who understood the therapeutic value of massage, how it can contribute to the healing process. With their support, she started raising money to reintroduce massage as an adjunct to medical treatment on a permanent basis.

Coinciding with Gina’s efforts, a multidisciplinary team at CHOP established the Integrative Health Program to combine mainstream medicine with complementary health practices. Integrative Health is focused on offering evidence-based therapies, such as yoga, acupuncture, mindfulness and massage, which reduce stress and speed healing by considering the whole child.

Last spring, Gina organized a Cupcake Wars competition in the local school district. Kids of all ages baked and decorated two dozen cupcakes each. One went to be judged; the other 23 were sold. There were face painters and balloon artists, too, to add to the fun. “We raised $2,000, which I think was really good for our first event. Johanna and her twin, Stone, participated,” Gina says.

Gina’s advocacy for massage is paying off. In March 2018, the team brought a world-renowned instructor in to teach pediatric and infant massage to CHOP staff and the community. Over time, as more funding is available, efforts will grow and be extended to other CHOP facilities.

That gentle touch is so positive. It has become a passion for me to make it available to these kids. I know in my heart that it will help them through the tough times they are facing.

Her own family’s tough times

Gina has walked in the shoes of other families whose children have cancer.

When Johanna was almost 2, she came down with a cold that lasted for weeks. When their doctor didn’t have answers, Gina and her husband, Sydney, grew frustrated. “I needed an answer,” she says. So she brought Johanna to a hospital in Camden, N.J.

There, a blood test showed that Johanna had leukemia. She was immediately transferred by ambulance to CHOP, where she came under the care of L. Charles Bailey, MD, an attending physician in the Cancer Center who specializes in treating children with leukemia and lymphoma.

“He was very compassionate,” Gina remembers. “He explained the treatment plan. CHOP’s team approach was comforting to us.”

In remission after chemotherapy

Johanna and her brother, Stone Johanna started chemotherapy, and she responded well to treatment. After just a month, she was in remission and has been in remission ever since.

Even with that excellent progress, it was a trying time for everyone in the family. “There were days when we were there all day,” says Gina. “The staff members at CHOP were so good to me. They encouraged me to get help, not to try to do it all myself. I learned how to hand it over and ask for help sometimes.”

Stone would entertain her when she was down, making her laugh and bringing her toys to cheer her up.

Now 9, Johanna — in addition to baking — loves to read and to draw. She sketches whenever she can, creating little booklets with characters and captions. “She’s very insightful,” says Gina. “She wants to find happiness everywhere.”

For the past two years, Johanna has participated in CHOP’s Cancer Survivorship Program, a special program to help children and their families navigate life after cancer.

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