Liz Willding Robbins

 is perhaps best known as a site where families experiencing a health crisis can blog about their experiences. Another popular site is 

, which also gives its community of members a forum to express their feelings.

Patients who want to simplify the process of maintaining and updating their medical records can turn to 

, an iPhone application created by Naomi Bartley, a childhood cancer survivor. When she was diagnosed with a second occurrence of cancer at age 24, Bartley says she felt overwhelmed with the amount of record-keeping that was involved.

She says she created the app so patients could easily access their medical information via their smartphone.

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Patients and families struggling with a childhood cancer diagnosis are turning to the Internet for support.

Finding Support Online

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.

Child-life specialist Jennifer Ellis, MEd, also at Johns Hopkins, adds that she often demonstrates procedures before the fact using a plain cloth doll. “We explore the steps and feelings associated with such procedures as I.V. starts, port accesses and lumbar punctures, letting the child take on the role of the nurse or doctor. Children often feel more comfortable talking through the doll to express their feelings.”

When a child has cancer, parents are often forced to focus more of their time on the ill child, taking him or her to doctor appointments or treatment sessions. “Often siblings feel left out,” Ellis says. “We encourage parents to take shifts, rotating time between the child who is sick and the other kids.”

Sometimes, she adds, we prepare parents for typical sibling responses such as wishing they had cancer, too. Creed recalls Micah’s older sister telling her, “I wish I was Micah. He doesn’t have to do anything.” In response, she asked her granddaughter to “sit on the sofa and do nothing for a while, then tell me how much fun you are having.”

When a child is well enough to return to school, child-life specialists support parents in two ways. “We go to the child’s class and ask them, ‘What do you remember about your school friend who’s been sick?’” Ellis explains, adding that school officials are also thoroughly briefed on the situation. “We assure the kids that cancer is not something that you can catch, and we help them come up with a plan to help welcome their classmate back. 

“With the child who has cancer, we role play, asking such questions as, ‘What if someone makes fun of you for not having hair?’ If they are teased, we empower the child to tell their peers that what they said hurt their feelings and take the opportunity to inform them of the reason for their hair loss.”

Survival rates have dramatically improved for childhood cancer, with nearly 80 percent of children living at least five years after diagnosis. As a result, many are now dealing with late effects caused by the treatments they received to cure their disease.

“It is hard for parents to focus at the same time on the acute or short-term effects to keep their child alive and the long-term or late effects,” explains Daniel Armstrong, PhD, associate chairman of the department of pediatrics and director of the Mailman Center for Child Development at the University of Miami Miller School of Medicine.

“If parents want to opt for alternative therapy as opposed to the standard of care or a clinical trial, there is little option for that,” explains Hoffman. “If they contest, child protective services could intervene. The answer is more research to develop less toxic, targeted therapies,” she says.

Armstrong, who is also co-leader of the Biobehavioral Oncology Program at the Sylvester Comprehensive Cancer Center, explains that late effects cut across every system of the body and can impact endocrine, reproduction, cardiac, vision, hearing and growth. They may also cause cognitive problems and secondary cancers later on, depending on the type of cancer and treatment.

In terms of long-term cognitive abilities, he emphasizes that approximately 60 percent of kids actually do fairly well after cancer treatment, some becoming super-achievers who graduate from college and pursue advanced degrees, frequently in medical professions.

When cognitive issues are present, Armstrong says they typically include problems in math, completing work on time and reading comprehension. “You may have to change the child’s way of learning, going from traditional reading and writing to listening and speaking.”

To help childhood cancer survivors reach their full potential, parents should watch for cognitive problems and work with educators to help overcome or compensate for deficits, Armstrong says.

When a second cancer is diagnosed, it can come as a crushing blow for both the parents and the child. “It felt like my body was giving up on me,” explains Bartley, who at 24 was diagnosed with a secondary thyroid cancer.

“It was a wake-up call and I realized that childhood cancer is something that I am always going to be fighting.”

Her mother relates a touching story of finding her daughter, following the second diagnosis, in her bedroom crying. “Naomi said that when she was a child with cancer, it was her mom who carried the burden. Now facing cancer as an adult, that emotional burden was placed on her,” Hoffman says.

Despite being told that she would never have children due to total body radiation exposure as a child, Bartley was able to conceive her daughter Hope, now nearly 3. The pregnancy was followed as high-risk due to the late effects of vascular uterine insufficiency and a shortened cervix. Hope was born at 25 weeks of gestation, weighing 1 pound, 7 ounces.

“Hope was hospitalized for more than three months and it was touch and go,” Bartley explains. “When I look back, I think about what my mom went through with me and I wonder, ‘How did she do it?’”

“I guess you do what you need to do, especially when you’re a mom. You learn to take each day as it comes.”

Parenting a child with cancer requires patience and persistence.

Liz Willding Robbins

Finding Support Online

One Day at a Time

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