by Alice E. Gerard
Casey Dahlstrom, 24, is an Eagle Scout and a wood carver. He works as an activity leader at Absolut Care, a nursing home in Orchard Park. He loves his job and says that his goal is to be "that funny faced, engaging activity guy." In school, he competed on the tennis and volleyball teams. He said that he has a passion for the water and that he loves getting to know about people.
Casey Dahlstrom is also a cancer survivor. His parents are Emily, 56, and Gary, 60. He has a brother, Eric, 31, and a sister, Jolie, 29.
On Oct. 3, 1991, when Casey was 3 years old, he was diagnosed with acute lymphocytic leukemia. Emily Dahlstrom, who kept a journal of the experience, complete with her original artwork, wrote about what life was like for a family with a seriously ill child. One day, she said, "Casey is much better after an exchange transfusion. He is scared and angry. 'I want to go home,' he repeated over and over. I think it would be easier on him and me if we were allowed to spend more time together."
Casey's brother and sister had to be told about their little brother's condition. Casey said that his brother and sister knew that his condition was very serious and that they wanted to help him in any way that they could.
Casey had chemotherapy at Women and Children's Hospital and radiation treatments at Roswell Park Cancer Institute. He said, "I remember the hospital and the tubes hooked to my chest. I knew that it was not pleasant. I knew that I was sick, but, every day, I remember looking out of the window. I wanted to be home. I wanted to be a normal boy."
In the hospital, Casey discovered the playroom. He said that he could frequently be seen running down the hall with an IV bag attached to him and an "IV pole dragging behind me. The nurses got used to seeing me when the playroom was open. I had no jungle gym to play on. I wasn't going to run a marathon, but I did make laps in the hallway."
Out of the hospital, Casey lived his life like other children and he was a student at Sidway Elementary School.
He went into remission but he relapsed more than once. Every childhood illness represented a dangerous threat to Casey. In March 1993, Jolie contracted the chicken pox, described by Emily as a blizzard of "chicken spots." When Casey caught chicken pox, he had to go straight to the hospital. Emily reported, "Casey is in solitary confinement. They call it strict isolation here... It is a mild case of chicken pox, so maybe Easter will be at home."
According to Casey, "The hospital staff was supportive and understood that having a sick kid was no joy for any parent." In her journal, Emily said that being her son's sole advocate caused her a good deal of "mental fatigue." She had to deal with insurance companies and with financial challenges. She wrote about the emotional roller coaster of her son's illness.
One day, Emily reported, "Casey was so good. He said it was because he's going to be 4 soon. I would've understood tears." Another day, she wrote, "Every week, Casey has a spinal tap now. He's always calm and cooperative and well supplied with toys. Then we wait for THE PHONE CALL. Thursday, Nov. 12, 1992, 1:30 p.m. Finally no more leukemia cells in Casey's spinal fluid." And, on another day, she wrote simply, "Casey's hair fell out."
Casey said that, at home, he was able to enjoy his childhood with a few restrictions. The main restriction was that he was not allowed to swim because he had a tube in his chest. And, for a while, he could not take a bath. "I had quite a few sponge baths," he said. When Casey was 4 or 5, he walked onto the dock behind his family home and fell into the river. "A family friend dived into the water and pulled me out." The bandage around his tube had to be changed immediately. "We were able to laugh about it years later."
Camp Good Days and Special Times, located on the shores of Keuka Lake, was a place for Casey to go where he felt that he really fit in. When he was 5, he went to the day camp and, at age 7, he went to the summer camp. "When you're at home, you have nothing in common with the other kids. At camp, we were a team, motivated to help everyone get over their hurdles. If you wanted to make it to the top of the rock climbing wall, we were all there, cheering and supporting you until you got to the top of that wall."
According to Casey, the fastest rock climber was a boy named Aaron, who had one arm.
Casey said that some friends died. He described a friendly young adult named Fritz, who drove a golf cart. "When we learned that he passed, they took his cart and memorialized it. They still have it at the camp."
Casey has now been cancer free for years. He still has annual checkups. "If nothing is out of the ordinary, we just say have a good day and go home."
Casey talked about how having cancer at such an early age affected him. "Having such a rough start opened my eyes that life is short. I don't want to live in a bubble but I also don't want to throw away my life doing reckless acts. I want my life to be something I can be proud of.
"Cancer made me stronger. I've always been open about my cancer experiences. I want people to learn and to understand. Embrace what you have today, because tomorrow it may be gone."
Casey started his own one-person Relay For Life team. He has raised $890 "through massive fundraising at work." He did an Easter basket fundraiser and a cutest pet contest. He is about to start a quilt raffle, with a quilt donated by the family of a co-worker.
"Relay is phenomenal," Casey said. "I love seeing the support of a whole Island as neighbors, friends, and complete strangers band together to wipe out cancer.
"Cancer hits us all. It may be a friend, grandmother, uncle, teacher, or someone in the news. To me, I see it as a challenge, a challenge that should never be fought alone," Casey said.