A young sister's writing the book on childhood cancer

July 31, 1994|By SUSAN REIMER

Brianne thought her older brother was breathing that way in order to drive her crazy. Wheezing and rasping just to push her over the edge, make her start yelling, get her in trouble.

"Make him stop," she demanded.

Evan's mother listened to her son breathe, and vague disquiet came over her. He'd been sweating -- a lot. And the spring flu that had passed through the family had not left him. She should get him to the doctor. Maybe it was mono.

In 48 hours, Brianne's pain-in-the-neck older brother was fighting for his life in the pediatric intensive care unit at Johns Hopkins Hospital. Burkitt's lymphoma, a rare cancer that may have been in his body for just two weeks, had shoved his heart and lungs into a corner of his body and filled his chest and abdominal cavity with cancer cells and fluid.

The next time Brianne saw her 13-year-old brother, he was tangled in a web of tubes and wires. He was 50 pounds lighter, and chemotherapy would soon leave him without so much as eyebrows. His endless retching made her ears ring.

Brianne, who turned 10 during the first of her brother's hospital stays, saw little of her parents for a month. Grandma and a new set of rules moved into her house. Grown-ups coddled her like a lost lamb, but school friends acted weird. Everyone asked about Evan. It took Brianne a while to find an answer.

"I don't need to talk about Evan," she said once to a gently probing question. "People with cancer don't always die."

Evan will finish his chemotherapy Aug. 15. He has an 85 percent chance of complete recovery. He will probably start the eighth grade with his friends in September. He is home now, greeting visitors, getting presents, getting his way.

Brianne? Well, she is working on a book. She wants to write about what it is like to have a brother with cancer. She wants kids to know what it feels like, what she feels like. "I want them to know what to say to people like me."

The book's title is "The Horizontal Summer," derived from a crack Brianne's mother made about all the sleeping that Evan does. "It begins in April, when we found out about the cancer. I don't know how long it will go," Brianne says.

Chapter I: "The Horrifying News at School." "They first told me that his appendix was going to be taken out and I was sad. Then my mom told me it was cancer. I felt like he was going to die. But my teacher told me that she had a brother who had cancer for a real long time and he didn't die. My teacher prayed for me and for Evan and I felt better."

Chapter II: "Evan 'The Hurler' Leith." "Evan wants to be a wrestler and he wants to be called that. Every day he would get sick. It was horrible. In the hospital he had a roommate who was a little kid and he would run out in the halls with his hands over his ears screaming when Evan would get sick. They had a recreation room down the hall and you could hear it there. I used to feel bad eating in front of him. But he is eating better now. Dinner is usually whatever he wants."

Brianne's book is populated by the people she has met because of Evan's cancer. Dr. Stan Goldman, his "guardian angel." "When Evan almost died he stayed with him for two days without sleep."

Larry, the Make-A-Wish Foundation guy who laughed and made Brianne laugh. "Once I said I should get cancer and get all better and then I would be able to wish for a horse. He helped me understand that wasn't a great idea."

"Home, The Final Frontier." That's the last chapter. "Home, because Evan is home now. Final, I don't know for sure. Evan will always have to be checked. If the cancer comes back, I don't know what they will do because they have given him the strongest stuff.

"I don't know if things will ever get back to normal. Dad is pretty much the same. He doesn't change very much when bad stuff happens. I argue with my mom a lot, but that's because she can't yell at Evan. But we always argued, and she's been going through a lot.

"Evan smiles more now. Before the cancer, he was, like, depressed. His friends didn't treat him right and he didn't know what group to be in, cool or smart. But he sees who his friends are now.

"I guess I will know Evan is back to normal if he drops the cat on me when I am sleeping. He can be a real pain."

To hear Susan Reimer read one of her columns, call Sundial and punch in the 4-digit code 6156. See the SunSource directory on Page A2 for your Sundial number.

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