Accentuating the positive

Nurse uses memories, family to cope with job stress

Sitting in the cafeteria at the University's Hershey Medical Center, Debra Shade's eyes alternate between tearing and sparkling as she talks about her job.

And she has seen their tiny caskets buried in the ground.

Because cancer in children has one of the highest cure rates -- up to 70 percent depending on the type -- most children live to become adults. For Shade and others, it is the few who don't that bring an element of sadness and grief into their work.

- Debra Shade, nurse specialist

"It's amazing the 5- and 6-year-olds who have definite ideas about what they want as they come closer to dying. Sometimes they want to give their stuffed animals away. . . . Sometimes they just need to talk it all out with their families so they know that their parents are going to be OK," she said in a quavering voice. "Many of them have end points -- things they want to do before they die. . . . They want to turn 7. They want to live until Christmas."

Shade said she never finds it easy to talk to a family about the possibility their child is going to die. She finds it even tougher when the family is angry about their child getting sick.

"You feel you've let them down somehow, and you know they're not angry at you, but they're angry just the same," Shade explained. "I think I've probably cried every time I've been in with a diagnosis talk. . . . As a parent, you blame yourself for every bad thing that ever happens to your child. It's very hard to look at these parents and say, 'You've done nothing wrong. This isn't your fault, but we can't tell you why your child has cancer.' "

Adding to the parents' grief and anger is the fact that cancer in children is not common. People expect smokers or older people to get cancer. Few expect an infant to be riddled with tiny tumors, like 2-year-old Kaily, who died last February from a congenital brain tumor.

Shade said there are several people who support her during these tough times.

"People within the division are very supportive of each other," Shade said. "There are times when you've had a horrible day and kids are dying and you just feel awful and someone will put their arm around you and say, 'Go home. Get out of here' or say 'Let's go have a soda and sit and talk about this.' "

Shade also tries to go to the viewings and funerals.

"I've been to more funerals than I'd like to think about over the years," she said. "Going to funerals and viewings for children is very, very difficult, and yet, there is something kind of soothing about doing that, a kind of closure."

Looking through the pictures and cards from the children also helps.

"I have a whole drawer full of pictures. . . . Some of them are kids that are still living and some of them are the ones that aren't, but you have to look at all of it together," she said. "When I'm really down, you just have to remember the kids that are doing very well. You can't focus on the ones who have died because the ones that are living are the ones that need you."

Shade also finds just going home and giving her 12-year-old son Alex a hug gets her through the day.

"He's grown up with this too. I took this job when he was 3. He feels some of this too," she said.

Three years ago, Alex went to dance marathon and met Jordan Arndt, who died at the age of 10. Jordan originally had a muscle tumor, but then relapsed with bone cancer.

"Mom first introduced me at Hershey and then I went to 'Thon. He was the only kid I really knew so I stayed with him the entire time," Alex said.

One of his favorite memories is playing with Jordan at dance marathon. Jordan often carried a football or would try to rope people with his lasso. Alex said he doesn't know most of the children his mother works with so the job is harder on her.

"I've only really known two that passed away so it hasn't been that hard on me," he said.

What is hard on his mother is working in the clinic, Alex said.

"The only day she has bad days are her clinic days on Thursdays when she does hands-on stuff," he said. "She doesn't like that part of the job too much."

Shade sometimes has to give a child a spinal tap or another painful procedure.

While a job where children die and suffer can be draining, Shade said working with children who have cancer over the years has changed how she views life.

A girl with an adrenal tumor and cancerous tumors throughout her body, gave Shade a charm for her necklace.

"It said, 'One day at a time.' And they told me that I had taught them to live one day at a time. Now this young lady will probably go on to die in the not-too-distant future," said Shade with a tear rolling down her cheek.

"I think I'm sounding like there's lots of bad, and it really isn't. There's much more good than there is bad in terms of these kids. Most of them do very, very well and go on to graduate and marry," she said. "Somehow it's the ones that don't do well that kind of sit there and you think about. That's why getting the invitations to things brings you back to the bigger picture -- that many, many more have done well than haven't."