One Day at a Time

Parenting a child with cancer requires patience and persistence.

When Naomi Bartley was diagnosed in 1987 with acute myeloid leukemia, there were few support services available for families. Her mother, Ruth Hoffman, describes her experience of being pregnant with twins while juggling the demands of an ill 7-year-old and an 18-month-old as “sheer hell,” adding “When people would ask me if I needed anything, I would think, ‘my kids need food and my toilets need to be cleaned!’”

Bartley survived thanks to a then experimental bone marrow transplant, but Hoffman recalls that “we felt very alone.” Now as executive director of the American Childhood Cancer Organization in Washington, D.C. (formerly Candlelighters Childhood Cancer Foundation), Hoffman says, “I do what I do because I don’t want anyone to go through what we went through.”

As any parent would agree, raising a child is hard enough, especially when managing normal accidents and illnesses that are part of growing up. Add a cancer diagnosis and the magnitude of the job increases exponentially. While most parents fall back on friends and family to ease the load, it’s often not enough. That’s why support is now available as part of overall medical care.

Today, most major pediatric medical centers offer an interdisciplinary approach to assisting families when a child receives a cancer diagnosis. Physicians, nurses, social workers and child-life specialists work as a team to provide comprehensive support for the family, says Diane McGinnis, LCSW, a social worker in the Center for Cancer & Blood Disorders at Children’s Medical Center in Dallas.

“My role is to help normalize the situation,” McGinnis explains. “I look for barriers and challenges that will present problems. In some cases, it may be a two-income family is now reduced to one. Transportation may also be a problem.”

Because childhood cancers often tug at the heartstrings, she says many resources are available through foundations, nonprofit agencies and other sources to help families in need. For Jody Creed, whose grandson, Micah, developed a brain tumor at age 2, a donated car greatly relieved her transportation worries.

“We live 75 miles from Children’s Medical Center in Dallas,” Creed explains, “and, although Micah’s cancer is in remission, we still have to return to the hospital about once a week. For a while it was really tough because we had only one vehicle. The donated car has been a godsend.”

From the moment treatment begins, nurses and child-life specialists support parents by putting their ill child at ease. “Most children come in absolutely terrified,” says Julie Sussan, RN, a pediatric oncology nurse at Johns Hopkins Children’s Medical Center in Baltimore. “We have creams to numb and reduce the pain of the needle ‘sticks,’ and we have medications to make a child sleepy during longer procedures, such as spinal taps. We also have movies they can watch to take their mind off of what’s going on.”

All of these measures are intended to help the child become more comfortable, which “becomes a relief for parents,” Sussan says.

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