Hospice Girl Friday | ‘When a Child is Terminally Ill’

Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.

My mom called me over the weekend to tell me about Kelly, her manager’s daughter. “She finally died, after twenty round of chemo and 5 surgeries,” my mom said, with an audible exhale full of sadness. “At one point they even removed one of her kidneys. Poor little thing.”

I had never met Kelly, but I felt like I had since my mom and I had talked about her so much over the two years since Kelly had been diagnosed with neuroblastoma, a dangerous yet common childhood cancer. That was right after her third birthday and right around the time most three-year-olds are learning to catch a ball and ask important questions like ‘Why is the sky blue?’

My mom thought that Bob, her manager, avoided confrontation at any cost, and she was frustrated by the way some of her co-workers seemed to take advantage of him on a regular basis. But when Bob came back from a long absence and told his team that little Kelly had cancer, my mom changed her attitude. After that, whenever my mom complained about work all I had to say was “Yes, but his daughter has cancer,” and her frustrations about Bob melted away into compassion.

“How is Kelly doing these days?” I’d ask.

“She’s on a new chemo that is making her sick, but Bob said they are going to stick with it. I hope they’re not chasing rainbows.”

“Mom, I can’t imagine what they’re going through. It must be impossibly difficult for everyone.”

“You’re probably right, but I just feel so bad for the little girl. She is sick all of the time from the chemo treatments. They keep taking her up to New York for surgeries. When does she get to be a kid?”

“I think Bob and his wife are trying to make sure she gets to be a kid. And a teenager. And a grown-up. How does a mother give up on her child’s future? You never would have been able to when we were little. You wouldn’t even now that we’re all grown.”

“Of course I wouldn’t,” my mom said without hesitation. “I just feel so badly for that little girl.”

There is a natural order to life: we are supposed to outlive our parents. It was my mother who first pointed that out to me when my friend Leslie was told there were no more treatments available to try to beat her cancer. Leslie’s parents were with her when she died a month shy of her 46th birthday. They are still outliving her.

I do not have kids so I know I will never understand how a parent might feel at any and every stage of a child’s life. But I have watched my own parents’ hearts soar with every high and break with every low that one of my brothers or I experienced. No one in my family has ever had to go through what Bob and his wife went through with Kelly (knock on wood), but I asked my brother David what he would have done if one of his now-grown sons was diagnosed with cancer at a young age. Would he let his child have some quality of life, or would he chase a cure?

“I would pursue every possible treatment, making any sacrifice necessary, even if it meant risking my own health and well-being,” David said. “Not doing so would not even enter my mind. Your thought of providing some quality of life is a consideration, but not at the expense of finding a long term solution or cure.”

David’s answer did not surprise me. My guess is my other brothers, who have two kids each, would say the same.

My hospice is for adults only so I have no experience with parents choosing–or not choosing–hospice care for their children. Still, most of the patients I see did not choose comfort care for themselves. They are in hospice because they exhausted all curative treatments available to them. Some patients have accepted their fates (not all loved ones have, however). Others are in denial or angry at the world or their god or their bodies for being so unfair. Modern medicine has done wonders to keep us alive longer than ever before, but now we are so ill-prepared to face death I often wonder if I would choose to forgo treatments that might prolong my life yet make me so sick I would not enjoy living, or if I would prefer to make the most of whatever time I might have left.

If I think I would have trouble making that decision for myself, I cannot begin to understand how Kelly’s parents could make any other decision than the one they did for their little girl. It’s a decision they will sadly have to live with–without her–for the rest of their lives.

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Bonus: For more on end of life care from a physician’s perspective, see How Doctors Die from our March/April 2013 issue.