Maggie Rowe is a pediatric oncology social worker at Providence Sacred Heart Children’s Hospital in Spokane, Washington. She helps families manage the many unexpected sides of cancer that are often overlooked.

 

“Having a child with a life-threatening diagnosis definitely is a trauma – it changes the way that you view the world,” she said. “A lot of parents and family members might have trouble sleeping, they might have excessive worries, and they might have flashbacks to seeing their child in fragile medical states. Seeing a child after surgery hooked up to a ton of tubes and lines, that’s very traumatic for a parent and sometimes they can’t get that imagery out of their brain.”

Rowe said that behavioral issues often develop in young children because they have lost so much control over their lives. They become angry about having to go to the hospital so often and about not being able to go to school or see their friends.

 

“The social part is a whole other ball of wax,” said Rowe. “Usually, in a two parent household, one parent has to quit their job to care for the child full-time. So that is a financial punch in the face, [especially] if you’re used to being a two-income household. The financial piece is absolutely a monster for families to deal with.”

 

With expensive treatment and long-term hospital stays, families are thrown into dealing with the health insurance system and government agencies to figure out their coverage and make ends meet. Some families end up applying for programs that they never would have imagined they would qualify for, such as food stamps.

 

“There are interactions with countless systems that people have never had before, so it’s a really rough transition,” she said. “As a social worker, we’re there to help guide them through the interactions with these systems, because all of them are really complicated. If you don’t have a lifeline, you can feel really lost, really alone, really confused and scared about how that’s going to affect your child and your family.”

Rowe said that her focus as a pediatric oncology social worker is to ensure that all needs are met, based on the individual situations of the patients and their families.

 

 “I work a lot with the doctors and nurses to figure out what the barriers are to a child receiving world-class oncology care,” she said. “Sometimes those barriers can be other social problems, maybe drug abuse in the family, maybe homelessness, maybe the parents can’t read so a written medication plan is just setting them up for failure. Let’s just find the barriers and pound them out one by one.”

Rowe even works with parents’ employers to ensure that they get the time off that they are legally entitled to, and she helps them learn about the laws that can protect them and also about realms where these laws may fall short.

 

In addition to the trauma and anxiety felt by parents, a major part of the psychosocial side of cancer is the patient’s siblings.

 

“Siblings are a huge piece of it too because they can become kind of the forgotten children in a lot of situations because [as a parent] your focus is on your child with the life-threatening illness,” Rowe said. “It’s very natural to have that happen, and we see siblings really struggling.”

According to Rowe, studies have shown that siblings of children with cancer can have PTSD, anxiety and depression that oftentimes parents do not have the time or resources to address.

 

“Think about how many family resources it takes to get a child to the hospital sometimes three times a week for outpatient visits or even for a long admission over several weeks. It’s hard to think about getting that sibling to soccer practice, let alone to maybe starting counseling,” Rowe said. “Those kids’ needs can oftentimes go unmet. It’s unintentional, but a really sad side effect of treatment for the siblings. They might get thrust with grandparents, extended family members or neighbors because the parents just have to be there with the sick child.”

Rowe also said that the hectic schedule involved with cancer treatment and the child in treatment’s weak immune system, can limit their social interactions and lead to isolation. When a child is first diagnosed with cancer, the community is often initially very supportive of the family emotionally and financially. But since childhood cancer treatment is a long process that often spans many years, Rowe said support tends to wane.

 

“The hospital becomes [the family’s] main source of support because they’re the people who have been with them day in and day out and understand their journey. But then when the child is off treatment, they lost the hospital’s support,” she said. “So we see a lot of families feel very isolated, which is not conducive to healing mental health issues. It’s really hard to maintain connections. A lot of families don’t have the time and emotional resources to keep up with their friendships. It’s a whole new transition once they’re done.”

 

For childhood cancer survivors, being done with treatment and “cancer free” does not mean that they will live their lives without complications resulting from surgeries, chemotherapy and harsh radiation. The following is the story of one local childhood cancer survivor and how her cancer battle as a child has continued to affect her life as an adult:

 

In 1989, three-year-old Becky Lidenberg was diagnosed with stage four abdominal sarcoma and given a 5 percent chance of survival. After surgery, two years of chemo and eight weeks of experimental radiation, Becky started kindergarten in 1991 a childhood cancer survivor.

More than two decades later, Becky still lives in the Spokane area with her husband, and while she remains cancer-free, she still lives with some of the lasting effects of cancer.

Though she was too young to remember a lot of her time in treatment, she has slowly learned about her family’s journey. However, she said it was difficult for her family to begin talking about it.

“I don’t remember a whole lot, which I always count as a blessing,” said Lidenberg. “We did not talk about it for a really long time. Neither of my parents wanted to talk about it, it was too hard for them. It wasn’t until I got older and I really had to be an advocate for myself. I needed to know all the information. But it took a long time for my parents to be able to talk about it and I’m still hearing stories to this day.”

 

At the time of her diagnosis, she had a younger sister and her mother, Denise, was pregnant. She said she definitely understands how the siblings of childhood cancer patients can be negatively affected during the time of treatment.

 

“It’s tough on the siblings because they get put on the back burner… which also brings up a lot of guilt for parents later on in life,” she said. “I’ve tried to not feel guilty about it. It’s tough, but it is what it is. It’s just how parents handle it – caring for the kid that needs it the most.”

Becky said that she never experienced any bullying as a child; her peers were mostly curious when she showed up to kindergarten without any hair. Her dad was a teacher in her school district, so most people knew that she had battled cancer.

 

Although she doesn’t remember much of her time in treatment, the lasting side effects have taken a toll.

 

“It wasn’t a big deal until I started dating,” she said. “That is where the most trouble came in, because I have side effects and guys just can’t handle it. That was the biggest problem. It would weird them out and I think they felt really uncomfortable and they didn’t know how to talk to me. One side effect it that I can’t have kids, and that is an issue for some guys. I dated a guy for a couple of years and that’s the reason why he broke up with me in the end.”

 

This is one of many examples ways that childhood cancer can reach into adult survivors’ lives. While her parents dealt with a great deal of emotions during her treatment, Becky was most affected by it once she grew older.

 

“It brought up a lot of emotions that I had never had to deal with and it brought up a lot of anger. I just threw myself a massive pity party,” she said. “For the most part I try not to think about it in those kinds of terms because it’s not helpful. But when that all started happening, I got really angry.

Physical effects of cancer can also result in psychosocial effects for cancer survivors. In addition to being unable to bear children, Becky is allergic to anything containing fructose, due to third-degree intestinal burns from the radiation she received. This allergy restricts her from eating any fruits or vegetables, among many other things, which she he has found to be socially restricting.

 

“Its tough because when you have intestinal problems, it limits how much you can do social-wise, so that has been a big issue, but I try to control it the best that I can,” she said.

 

Becky said cancer was a very taboo topic when she was diagnosed. Though it is talked about more easily today, she said she doesn’t think there is nearly enough awareness of childhood cancer.

“I think for a long time that people thought of cancer as something you did to yourself, like lung cancer from smoking. I think that when people used to think ‘cancer,’ they’d think, ‘oh, you didn’t take care of yourself.’ Now that people do see that it’s so many kids that don’t do anything to deserve cancer, I think people realize that it can happen to anybody and it doesn’t matter who it is.”

 

Becky attributes this discomfort surrounding cancer to the fact that her generation was the first to have many childhood cancer survivors, due to improvements in treatment.

 

Becky said she still receives support from friends and family, even though the cancer is gone.

“It is not a one-person job getting through [childhood cancer]. It takes everyone you know, forever, for the rest of your life. It’s going to take people who understand what you went through and who can help you get through it.”

 

Becky married a year and a half ago and still lives in the Spokane area. She and her husband are currently looking into adopting a child. Her mother, Denise Caldwell, is the Patient Services Coordinator for the American Childhood Cancer Organization Inland Northwest with an office located in Providence Sacred Heart Children’s Hospital.