By Tina Anima
Johannah likes pizza and soccer, and she loves to read. But favorite foods and grassy fields don’t figure into this nine year-old’s idea of a perfect day.
Ask Johannah how she’d like to spend a day doing whatever she wants, and she’ll head right to Children’s Hospital of Wisconsin, where her little brother was a cancer patient in 2008.
“I would like to give the kids in the hospital what they want because I like to see kids in the hospital being happy even when they’re going through a hard time,” she says without hesitation.
This little girl with a big heart has spent much of her life around hospitals. When she was six and her brother Eric was three, Johannah saw her parents worrying over a mole that had grown on Eric’s leg. Eric was eventually diagnosed with a rare form of cancer often confused with childhood melanoma. His diagnosis set off a string of visits to the hospital for check-ups and chemotherapy.
Johannah’s mom and dad were busy caring for Eric. It was hard for Johannah.
“She really didn’t understand what was going on. She wasn’t able to express what she was feeling at the time,” Johannah and Eric’s mom, Jill, said.
Jill signed Johannah up for social worker Paula’s “Siblings Like Us,” a group for children who have brothers and sisters with cancer. Paula used Magnificent Marvelous Me! to ease Johannah and other youngsters into expressing themselves.
“The book helps to organize and label their feelings. If they do not feel comfortable speaking out loud, they can always use the book as a kind of diary,” Paula said.
The activities in the book appealed to Johannah, who enjoys arts and crafts.
She began to realize that sometimes she got frustrated at home when her mom and dad didn’t have time for her.
“I would get upset because my brother was getting a lot of attention because he has cancer,” Johannah said.
A self-portrait activity in the book allowed her to focus on herself, sketching a picture and choosing what type of smile to include on her drawing. She met other youngsters who also had siblings with cancer, and discovered that they were feeling some of the same things, too.
“As she’s grown through this experience, she’s been able to express the other grieving feelings of sadness for her brother and other kids who are going though this,” mom Jill said.
Johannah liked playing with Eric, but that wasn’t possible when Eric was feeling sick or undergoing treatment in the hospital. And she worried about her little brother. She had sleepovers at her grandma’s house, and thought about Eric while she played with her cousins. She turned those play sessions with her cousins into ways to help Eric.
“We’d do arts and crafts and everything. And we would give them to him when we visited him in the hospital,” Johannah said.
In Paula’s group, and with the help of activities in Magnificent Marvelous Me!, Johannah found a place to share her fears and apprehension, too.
“I think that’s one thing that’s on her mind. That her brother might get cancer again.
She’s very protective of him,” Jill said.
Cancer and her little brother filled her thoughts, even at school. When she was seven, Johannah and her classmates made construction paper turkeys for Thanksgiving, and wrote messages of thanks. Johannah’s message read, “I am thankful for my family. I am very thankful for medicine, doctors, nurses for helping my brother live and not die.”
At school, there were times when classmates avoided talking with Johannah when she was feeling worried or sad. As a fourth grader now, she’s had time to think about those days. Her advice to kids who have friends in a similar situation would be to try to make the person feel better by doing something as simple as just talking to them.
And her advice for kids who have siblings with cancer? “Try to have fun and think positive that your brother or sister is going to get through.”
While Eric’s cancer has been in remission for two years, he and his family will live with yearly check-ups and routine hospital visits for the next 20 years. Because Eric’s cancer is so rare, he is part of a case study in the hopes that he can help doctors figure out the best treatment plans for other children who are diagnosed.
“It is a lifetime experience,” Jill said, and it affects the entire family.
With a cancer diagnosis, childhood rituals like Halloween and the tooth fairy take on extra special meaning. As the older sibling, Johannah guided Eric along. She helped Eric build his first snowman. At Eric’s first sleepover at their grandma’s house, a protective and restless Johannah finally fell asleep when she clasped her brother’s hand.
On the “Feelings Masks” page in her Magnificent, Marvelous Me! book, Johanna drew a half smile in the section that asked her to draw the face that she shows to others. The other half of the page features a second picture, which is supposed to show what Johannah feels deep down inside.
“I drew a full smile. Because I know that I’m loved,” she said.
Bruce Tyler was well-known in the Seattle area print, and business world as well as the nonprofit world. His commitment to children developed from his own experience with serious health issues. As a young diabetic, he understood first-hand the fear that hospitalization can bring. As an adult, he had a kidney pancreas transplant to cure his diabetes. It was at this point that he decided to dedicate his life to helping kids in crisis.
