The battle of his life
June 12, 2008 · Updated 2:43 PM
Nolan Soete never knew a battle he couldnt win.
Whether it was on the gridiron or baseball diamond at South Kitsap High School, Soete was a one-man wrecking crew.
Why would his fight against a deadly disease be any different?
A two-sport star at SK from 1998-2000, Soete was well on his way to making a name for himself as a baseball player at Pacific Lutheran University.
After his freshman and sophomore years, Soete held a career .312 batting average with eight home runs and 45 RBI. In September 2002, Soete was back at school gearing up for an even bigger junior year at PLU.
Then one morning, his life started to get sucked out of him literally.
It just hit me one day in September, Soete said. I was out of breath when I walked up the stairs. My heartbeat was pounding while I was lying in bed at night. I thought it was a virus or something.
Soete went to see a doctor and had some blood work done, and he returned to class the next day.
That day my dad (Harry) came to school and had somebody pull me out of class, Soete said. I was rushed to the emergency room because it turned out my blood count was so low.
Within hours, Soete went from taking notes in class to receiving blood transfusions. While sitting in the waiting room awaiting further tests, Soete began to lose sight out of his right eye because of a hemorrhage.
Thats when I started to get scared, Soete said.
His fears were further enhanced when he was given an initial diagnosis of leukemia. After three to four days of more tests doctors told the Soete family he didnt have leukemia.
Instead, he had a rare disease similar to leukemia called Aplastic Anemia, an extremely serious disorder that results from the unexplained failure of the bone marrow to produce blood cells.
Doctors told Soete the survival rate for this rare disease was higher than that of leukemia, but, as he would find out, the journey ahead would be one filled with immeasurable pain and sacrifice.
A long way from home
My family was happy it wasnt leukemia, but I knew it was a serious disease though, Soete said. I knew my body wasnt producing red blood cells and I cant live without them.
The only way to cure this disease was through a bone marrow transplant.
The odds of Soete matching his parents were 1 in 10,000, but the odds of a matching his sisters were one in four.
After three long weeks of waiting, Soete got the news he wanted to hear.
His younger sister, Jacinda, was a 100 percent match.
On Oct. 3, Soete moved into the Pete Gross house, which serves people with cancer and their families who are admitted to the Seattle Cancer Care Alliance (SCCA) and being treated by the Fred Hutchinson Cancer Research Center, University of Washington Academic Medical Center, and Childrens Hospital and Regional Medical Center.
Soete was being prepped for the next three weeks, which meant immune-suppressant and chemotherapy sessions before undergoing a transplant on Oct. 16.
For a successful transplant, ones immune system must be shot in order to allow the new blood cells to take over. But this also leads to a high risk of getting seriously ill with nothing to combat that bacteria.
On the night before transplant, Soete was hit with the worst-case scenario.
I got really sick that night, Soete said. My throat swelled up with white sores so I was rushed to (University of Washington for eight days and the transplant had to be postponed).
The setback was devastating to him.
That was the most bummed out I had ever been, Soete said. It hurt more than when I first got the news I was sick.
After healing up, he underwent chemotherapy again and prepared with his sister for a Nov. 5 transplant. Harry said he feared for his sons life on the day leading up to the transplant.
They inject this horse serum that delivers the final blow to your immune system, Harry said. Nolan didnt take to it very well. He started to convulse and his teeth were chattering. It was like he was freezing to death.
This serum, which had to be administered 24 hours before the transplant, had to be in Soetes system for 12 hours in order for it work.
After the first hour, Soete was in such bad shape the doctors stopped the treatment and tried a couple of hours later.
The doctors started up again and Soete continued to struggle mightily.
He was shaking so bad we had to hold him down to keep him from shaking, Harry said. It was getting down to crunch time and he had to have it, Harry said. We were worried because in our minds (the serum) was killing him. But Nolan said, Dont stop until its gone. He went through it just in time.
The next day, Jacinda had four pints of her blood taken out.
Since a woman carries about six and a half pints of blood, Jacinda had blood that she gave three weeks earlier transfused back into her body.
When Jacinda awoke, she was wheeled up to Nolans room to watch her blood go into his body via a pic line in his chest. Nolan said Jacinda could only watch for 10 seconds before her emotions and pain from the procedure got the best of her.
Jacinda told me watching the blood enter my body was the greatest feeling of her life because she knew that she was saving my life, Soete said.
Soete said doctors told him he would start noticing improvements 17 to 18 days after the transplant.
Sure enough, after 17 days we started to see my blood count go up, Soete said.
At about the end of December and early January, I started noticing changes. My hair started to grow back and my body started making its own blood.
By the middle of January Soete didnt need blood transfusions anymore.
That was a really good sign because that meant my body showed no signs of rejection, he said.
On Feb. 3 Soete was told 60 percent of his cells were his sisters and 40 percent were his.
My body was trying to fight her cells off, he said. But by the end of February it was eighty (percent) to twenty (percent). I would guess its probably 90 percent (her cells) now.
Getting his life back
Deeming the transplant a success (so far), Soete started thinking about his future again.
He asked his doctor if he could re-enroll at PLU and play baseball again.
The doctor told me if everything keeps going well, I could do it, Soete said.
Hearing that from his doctors lips was magical.
I just want to get better so I can go back to school and play baseball again, Soete said. Im feeling a lot better. My energy level is back to about 90 percent.
He said he is dedicating the entire summer to getting back in shape, with exception to a few detours on the golf course (with a cart).
Soete, who has been running two miles a day, has been in constant contact with first-year coach Geoff Loomis.
Loomis is eager for his return, though he will have to earn a spot on the team just like everyone else.
I know I have to earn my spot, Soete said. Im looking forward to the competition but I have to get back into shape first.
Drawing inspiration from others
Soete said he couldnt have fought the fight without the support of his family, friends, and various strangers who lent their support with words of encouragement.
While lying in the hospital bed in Seattle, Soete got an unannounced visit from his high school coaches D.J. Sigurdson, Eric Canton, Steve Reischman, Jim Fairweather, Dave Goodwin and Elton Goodwin.
A flock of friends and family also visited him those early days in the hospital.
That was pretty special, Soete said. It was awesome having all those people there. It lifted my spirits.
One of the greatest gifts came from a group of sixth graders Soete had never met before.
Students in Tom Schmucks sixth-grade class at East Port Orchard Elementary sent a roomful of get-well cards. In return, Soete and his dad recently paid a visit to Schmucks class and answered various questions from the inquiring minds.
Harry said its obvious the last four months of 2002 were the worst months of a mothers, fathers and sisters life.
Youre not supposed to out-live your kids, Harry said. Nolan asked me early on if he was going to die. I told him no. We always had a lot of hope and a lot of faith. His recovery is a blessing.
While thankful of his sons recovery, Harry said the disease would always linger in the back of his mind.
Until they find a cure, we will never be relaxed about it, he said.
Harry said the important thing is to concentrate on the now and his sons promising future.
I cant wait to see him play baseball again, he said. I hope he plays ball for a long time to come. Hes got the ambition to play and the ability to do it.
Hes also got the courage and fortitude to take on the next pitcher he faces, because its nothing compared to the battle he won seven months ago on a hospital bed.