Patient Stories 1998

Kids With Courage

Patient Stories 1998

Following Kids With Courage II, held in September 1998, a book of patient stories was published. These stories, told by the patients and their families, related what it was like to be a child with cancer. Many reflect on the stress and fear, but all reflect the hope and tremendous spirit of the children whose lives were so profoundly affected. These are a few of their stories.
 
Building Trust

My son, Joe, was diagnosed with a Wilm's Tumor one week after his first birthday. The many pokes, X-rays, and hospitalizations he endured made him leery or strangers. He was not trusting of anyone outside of family, especially if they were dressed in white. But on the final day of his last hospitalization for chemotherapy, something wonderful happened.

Joe and I had spent the entire week in Madison. It had snowed most of the time. I was unable to get out and attend to the car. I wasn't even sure it would start. For several months, a male nurse named John had been assigned to Joe for his week-long stays. I remember John as being a large guy. He could easily have been a starter for the Packers. As John administered the last chemo injection, we talked and I told him about my predicament with the car. John suggested that he could watch Joe while I attended to the car. Then ever so tenderly, he picked Joe up and placed him on his shoulder so Joe could rest his head. With the IV pole in the other hand, they set off down the hall. Joe had finally let down his guard and placed his trust in John.

To tell this story gives me the opportunity to thank all the caring nurses, doctors, and medical support staff who give that little extra special attention that means so much. Thanks.

By Mary Bohr
For Joey Bohr
Wilm's Tumor
Diagnosed at 1 in 1984
 
Three And Brave

Three days before Katie’s third birthday, she was diagnosed with a Wilm’s tumor. Throughout her treatment which included surgery, radiation, and chemotherapy, Katie showed remarkable courage.

As Katie matures, we are learning more about her feelings then and now. Recently I asked Katie if she was ever afraid. Her simple reply was "No, Dad, I just tell myself, 'Katie, be brave.'"

We have learned from our experience with cancer that the healing process is ongoing.

By Chris Wagner
For his daughter, Katie Wagner
Wilm's Tumor
Diagnosed at 3 in 1990
 
Common Bond

It is a privilege to be a survivor. When you are first diagnosed, you have no idea what the next day will bring. Kids who have fought the battle with cancer and have won will always have a tremendous amount of inner strength. No one will ever know what it is like unless they too, strive against and win the exhausting battle themselves. As a survivor, I now treat every day as something special and I see what really matters in life.

Ashley Galston
Hodgkin's Lymphoma
Diagnosed at 16 in 1995

Green Sheets and Ham
 
Dexamethasone is a wonder drug. It helps prevent infections for children on high doses of chemotherapy. It also makes you hungry.
 
Rachel, 4, woke in the night to raid the refrigerator. The next morning she woke her mom. "Mom, I ate nine slices of ham last night. My hands got really greasy. But don't worry. I wiped them off on my sheets. Can you make me breakfast now?"
 
Her mom said since she ate so much in the night, she could wait a bit for breakfast. About ten minutes later, Rachael returned to her mom. Doughnut powder and crumbs were stuck to her mouth, chin and nightgown. "Since I was waiting, I ate two doughnuts. Now can you make me some eggs?"
 
Rachael Larson
Leukemia
Diagnosed at 9 months in 1989, and again at ages 4 and 9