Full strength: Dealing with your child’s illness

C-VILLE KIDS

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Ellie Blaine was diagnosed at age 2 with a rare form of cancer called pineoblastoma. Photo: Elli Williams

On her second birthday, Ellie Blaine started vomiting repeatedly. After two weeks of multiple doctor and ER visits, her parents finally knew why: Ellie was diagnosed with a rare form of cancer called pineoblastoma. The family was in shock.

“We knew she was sick but we didn’t expect a brain tumor,” said Carly Blaine, Ellie’s mom. Soon after an initial surgery, Ellie and her dad, Richard, flew to St. Jude’s Children’s Hospital in Memphis to start chemotherapy. The parents would be geographically separated for five months: Richard at Ellie’s bedside while a very pregnant Carly cared for their 5-year-old son in their Orange, Virginia, home. It’s a situation too many families know all too well.

“Invisible patients”

When a child faces a potentially deadly illness, few aspects of daily life are unaffected. From emotional shock to financial strain, a life-threatening disease profoundly affects the entire family.

Parents of sick children are sometimes called “invisible patients” due to the toll stress takes on them. They may suffer symptoms ranging from intense fear, helplessness, and irritability to nightmares and anger—all the while wondering whether their child will survive.

Carly avoided some of that stress by intentionally focusing on each day instead of worrying about the future. She said once you start wondering about the treatment, or what might happen in 10 weeks or five years, “your brain can’t stop.” The Blaine family knew they needed to take things a day at a time, “even if that meant sitting in our pajamas all day.”

Money troubles

Financial stress is a common theme among families with a child who’s extremely ill. Parents often have to stop working, spending months at a hospital, racking up hotel, flight, and food expenses on the road—all while watching medical costs mount.

For the Blaines, finances could have easily become a huge concern. Carly took leave from her job as a school counselor in Culpeper. Her husband, Richard, took 14 weeks off from managing Charlottesville’s Old Navy store. But family and friends pitched in, donating money and organizing fundraisers, even covering the cost of the family’s babysitter. Friends also paid for the precious iPads that let the family see each other when Ellie was in the hospital. The Blaines checked in across the miles, staying positive and celebrating even a small victory.

Fortunately, there has been a lot to celebrate. Ellie’s chemo appears to be working. Her tumor has been gone for awhile, and her spinal fluid is now clear. Richard’s back at work and Carly’s looking forward to having her whole family at home together for the first time. She says 5-year-old Noah has his own plans.

“My son says he’s just not gonna stop hugging his sister.”

Resources

Parents with a child who’s fighting for her life can, and should, reach out for support. Clergy members and mental health workers offer counseling, but others can help too, like:

Friends: People often say, “Let me know how I can help.” Whether it’s running errands, preparing meals, cleaning house, or helping with yard work, that assistance lets parents spend more time with their child.

Strangers: Parents can connect online, by phone, or in-person with others in similar situations. Visit cancercare.org/tagged/children.

Hospitals: UVA Health System provides social and spiritual counseling, as well as patient navigators, who can help parents access financial information, educational programs, and nutrition counseling.

Kids: In Charlottesville, Camp Holiday Trails is a summer camp for kids with special medical needs including cancer—and it welcomes siblings. Financial assistance is available.—Lynn Thorne

Want to help the Blaine family? Visit support4ellie.wordpress.com for more information.

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