Katie Tenhoff donates bone marrow to save her brother’s life
By Kristen Miller
COKATO, MN Two years ago, when 18-year-old Katie Tenhoff, Cokato, found out she was the only sibling whose bone marrow matched her brother’s, she was really excited and overwhelmed at the same time.
“I felt like I had a responsibility and I was very glad that I could give my little brother a chance at life,” Katie said. “I remember that the whole [next] day at school was kind of a blur, like I was in a dream.”
Katie’s brother, Taylor, who is now age 12, was diagnosed with Severe Aplastic Anemia in March 2008.
In May, Taylor received a bone marrow transplant with Katie’s bone marrow at the University of Minnesota’s Amplatz Children’s Hospital.
Taylor was originally taken to the doctor because he was experiencing headaches along with frequent and easy bruising. He was also tired all the time.
Blood tests showed his hemoglobin was dangerously low, along with his platelets and white blood cells.
“I was as white as a Tim Burton film,” Taylor joked.
Taylor had an auto-immune disease called Aplastic Anemia that was causing his immune system to attack the body’s bone marrow.
A bone marrow transplant would be necessary for his survival. Even with a perfect donor match from a family member, there was still only a 50 to 70 percent chance of survival, said his mother, Monica Tenhoff. Many children, following transplant, get deathly ill, she said.
For about two to three weeks, the Tenhoffs waited for results from testing of Taylor’s six siblings.
Katie was the only sibling to be full match.
“I was so lucky for my sister to be a full match,” Taylor said, who underwent the bone marrow transplant May 5, 2008.
Though Katie had been a little apprehensive about the procedure, once it was explained to her she thought, “I can definitely do this.”
The procedure involved being put under with an IV and the surgeons inserting a needle into the back of the hip bones to draw out the marrow, Katie explained.
“I would definitely recommend people sign up to become bone marrow donors. It’s really easy, and the only physical pain I felt was a discomfort in my lower back for about a week,” Katie said.
“It might seem scary at first, but knowing that it would save a life is a huge reward,” she added.
Taylor’s bone marrow transplant only took 17 days, which is a record at the U of M, Taylor bragged. The family was told the average was two months.
First, Taylor underwent chemotherapy, the most aggressive cancer treatment, to destroy his own marrow in preparation to receive new marrow.
Taylor’s doctor told him his transplant was “picture perfect.”
For the first 100 days after the transplant, Taylor had to live within 15 minutes of the hospital just in case he would get sick or have complications.
“Taylor never had to go back to the hospital, which most [transplant patients] do,” Monica said.
In fact, Taylor was responding so well to Katie’s bone marrow, he was able to go home before the 100 days were up.
Being able to be her brother’s bone marrow donor has made Katie more appreciative of her family and life.
“Watching my little brother literally waste away while the chemo slowly destroyed his diseased marrow is a hard thing to do,” Katie said.
Now, she is happy to see her little brother getting excited about the simple things in life, like hanging out with his friends.
“What he is doing is living life to the fullest,” she said.
“A lot of people don’t understand how precious life really is and they just take it for granted,” she said.
“But when I look at my little brother and think about all that he has been through, I can understand that he knows what it’s like to be facing death. You can’t truly appreciate life unless that has happened to you personally,” Katie said.
Through it all, Katie and her family have learned just how important it is to donate not only bone marrow, but also blood.
Every year the high school has an annual blood drive. Before she saw her brother be dependent on blood transfusions, Katie never actually thought about donating blood.
“Most of the time, they were what was keeping him alive,” Katie said. “A lot of people need blood transfusions every day and to me, donating is something that everyone can do to help.”
Everyone in Taylor’s family who is 18 and older is also on the national bone marrow donor list.
To become a bone marrow donor, join the National Marrow Donor Program, “Be the Match,” at www.marrow.org.
Taylor moved back home July 11, 2008, and is in good health.
The family gives much appreciation to the dedicated staff at the University of MN, especially Theresa Kivisto of Cokato, who was Taylor’s nurse coordinator.
“She was always ready to help,” Monica said.
A wish come true
Not only was Taylor’s bone marrow transplant a success, but he also got a wish granted.
Since Taylor’s illness had been life-threatening, he was contacted by Wishes and More, a Minnesota wish granting organization.
This past October, Taylor’s wish was granted and he and his family were off to Disney World.
“The happiest part was seeing a bus go by and the kids pressing up against the windows, looking at us get into the limo,” Taylor said. The family left the day before MEA break.
Throughout the trip, Taylor was treated like a king.
On the plane, he was able to meet the pilots inside the cockpit.
During the flight, Taylor was asked by his flight attendant, James, to help hand out snacks for the passengers. James also gave Taylor a name tag with wings.
This was also Taylor’s first plane ride, so he was fascinated with the plane taking off and flying through the clouds.
The family stayed at Give Kids the World Village, which provides cost-free experiences to children with life-threatening illnesses, and their families.
The family also received passes for all the theme parks including the Disney theme parks and Universal Studios.
Taylor and his family also got to travel to the ocean and visit the Kennedy Space Center, which was also on his wish list.
“It was pretty amazing,” Taylor said.