This article appears in our November 2015 issue of Indy’s Child Parenting Magazine. Pick up a copy at your local Marsh store, YMCA, public library or community center!
In February of 2011, Beth and Chris Edwards had two healthy, beautiful boys. Blake was 4, and Ben 18 months. Then suddenly Ben’s health began to deteriorate. He started needing a wall to hold himself up when he walked, and he would wake up from naps cranky, disoriented and shaking. After a visit to the pediatrician, he was diagnosed with a double ear infection. After a round of antibiotics, his symptoms were not improving. In fact, he had gotten progressively worse. On April 18, 2011, a CT scan revealed Ben had a mass on his brain.
The Edwards were in shock. Two days later, their little boy had surgery to remove the tumor and was diagnosed with ependymoma – a disease in which cancer cells form in the tissues of the spinal cord and brain. The surgery was an extremely complicated and difficult one, and the doctors prepared Beth and Chris for potentially bad news. Thankfully, the surgery was successful, and doctors were able to completely remove the tumor. After surgery, Ben had 32 radiation treatments to ensure the mass would not grow back. After months of treatment, he was finally declared cancer free and is now in remission.
A cancer diagnosis is often a parent’s absolute worst nightmare. How do families cope with such a grave situation and manage the care of their sick child along with the ongoing responsibilities of home life? For the Edwards, the caring people around them were essential.
“Coworkers, family members, the people at Riley…there was overwhelming support. You felt like you were never alone,” says Beth.
Joyce Crane is a case manager at Riley Children’s Hospital and has seen how important a support system can be to families in times of crisis. “All of our patients are assigned a social worker. They meet with the family and help them identify what their internal resources are – their family resources, their friends, their spiritual resources. And then any holes or gaps that are there, they can help them find community resources,” she explains. Staff form a diagnosis and treatment plan and educate families about the disease and treatment. Parents are given a calendar of treatments so they can plan the rest of the family’s lives and activities around appointments.
For families with other children, the cancer diagnosis of their sibling has a ripple effect on the entire family.
“If they have siblings, they really get cancer together,” says Chris. “The emotional fall-out for the family is very difficult. That’s the hardest piece, and we never did figure it out.” Beth adds, “Just because the other child isn’t having problems at the moment, don’t assume that they are coping and okay.”
Another issue families often have to deal with is the unexpected side effects of medication on their child. Some medicines can cause kids to become much angrier and aggressive than normal, with belligerent behavior as a result. Crane encourages parents to still try and maintain normal discipline. In the Edwards’ situation, Beth says,“One day Ben was so upset, and he was trying to hit. I grabbed his arm, and I sternly said, ‘You do not hit.’ The nurse looked at me and she just praised me for still being a mom and not allowing him to misbehave. And what she said stuck with me for a long time. It was, ‘You still need to be a parent now, because when you have a healthy kid come out of this, you want a well-behaved healthy kid.’ And so it was just every day deciding, we’re going to have a healthy kid when this is all over.”
That realization of treating Ben like a normal child as much as possible throughout the ordeal was key for the Edwards. Ben’s brother Blake played with him as usual – which their radiation oncologist said played a large part in Ben’s recovery and rehabilitation. “That’s important, seeing that they can still have a piece of their normal life,” says Crane. “It’s not all about cancer. You have to focus on what they can do instead of what they can’t do.”