Joey Stott

Everything in Joey Stott’s life changed in the span of five days.

On May 1, 2004, Joey, then 28, was healthy. A single mother with a young son, she had recently married Philip, a single dad with two children of his own. This newly blended family had just begun to come together on the small Illinois farm they called home.

But by May 6th, doctors thought Joey only had hours to live.

“It was all so fast. I woke up one morning sweaty and with a headache.  I thought it was the flu. A few days later I couldn’t get out of bed.”

Joey was fading fast and struggling to breathe. She was rushed by ambulance two hours to the University of Wisconsin Hospital in Madison. “Doctors told my mother that they didn’t think I would make it to Madison and to prepare to say goodbye.”

She made it to Madison, only to be diagnosed with acute myeloid leukemia.  “I remember thinking: OK – fix me, just don’t make it hurt. Well, little did I know …”

The transplant

Joey learned quickly that her only hope for survival was a marrow transplant. But like 70 percent of patients in need of a marrow transplant, Joey had no donor match in her family. She would have to rely on the kindness of strangers and hope to find an unrelated marrow donor on Be The Match RegistrySM.

Doctors found a match for Joey and on Oct. 15, 2004 she had her transplant.

“My whole family was sitting around my hospital bed when the nurses and doctors brought in this big bag of what looked like thick blood. It was the marrow cells. They hung it up on the rack next to my bed and plugged me in. I just stared at it the whole time it was dripping into me. I was trying to imagine what the donor was like, who he was.”

Thousands of miles away, Joey’s donor, Tom Wilhelm of Colorado Springs, CO, was wondering about the patient who received his marrow. He would spend the next year trying to imagine her.

The battles

Like so many marrow transplant patients, Joey had to battle her illness on multiple fronts - some more cruel than others.

She had insurance, but it only covered 80 percent. Joey and Philip ended up with $40,000 in medical bills they couldn’t’ pay. “I didn’t think about the medical bills while in the hospital and my husband didn’t either, but there was a lot to think about when I got home.”

They shelved the idea of college savings plans for their children and did without necessary repairs to their 100-year-old farmhouse. Expenses were out of control. Joey was taking 23 medications and paying $300 to $400 each month in prescription co-pays.

Most cruel of all, however, was the temporary breakup of Joey’s new family while she underwent transplant. Joey’s young son went to live with her ex-husband, Philip’s two children went to live with his ex-wife, and Philip, well he had a new daily routine.

Now the sole income for the family, Philip worked full-time during the day in Rockford Ill., drove two hours each evening to be with Joey in her Madison hospital, and fell asleep each night on the recliner in Joey’s room.

Joey remembers only seeing the kids three times during her hospital stay.  She was particularly worried about her youngest, Michael, who was 11 at the time. “He made me a dragon out of clay and it had big teeth. He told me it was a cancer-eating dragon and that I should keep it with me always. To this day it is still by my bedside.”

Kisses from across a room

The family went on scattered and separated for about two months before Joey was allowed to come home. “I spent about two years on the couch trying to get better, trying to get my immune system to rebuild. I had my dog to keep me company and the children were now home, but all they could do was blow me kisses from across the room.”

Joey said she doesn’t remember feeling hopeless or depressed. What she does remember is the anger. “We had been married less than a year. We had just bought our farm. My husband and I and the kids were just beginning to meld together as a family. Everything was thrown back in our faces.”

“If it wasn’t for Tom, my marrow donor, I wouldn’t be alive. He’s my angel. I am not sure marrow donors realize that it is not just one person’s life that they are saving. They are saving entire families. Tom helped me keep my family together. Yes, it is a blessing to survive but it is just awesome to see my family all together. It’s the way it should be.”

Joey and her family are the recent recipients of a new home, thanks to ABC’s Extreme Makeover: Home Edition. The television show selected the Stott family who has beaten both cancer and a devastating house fire to stay together. The episode, airing Sunday, November 15th 8/7c, will help spread the word about the need for more marrow donors and the unique struggle faced by patients who need a life-saving marrow transplant. 

Learn More

•  Read Tom Wilhelm's story 

•  Learn more about the Patient Assistance Program

•  Read stories of patients helped through financial assistance

•  Be The Match joins with Extreme Makeover: Home Edition

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