Adam's Army supports family in crisis

The flu.

It’s not that uncommon.

But for Adam Reed, he didn’t get better.

“We took him to the doctor thinking that he’s probably going to give us an antibiotic and give him a pat on the head and send him home,” said Mary Reed, mother of Adam. “More blood work came in by the end of the day and they finally said, ‘No, he has leukemia’.”

Within 24 hours, the Reed family’s life “turned upside down,” according to Mary. 

In February 2003, Adam was diagnosed with acute lymphocytic leukemia, Philadelphia positive. He was 13.

Acute lymphocytic leukemia (also known as acute lymphoblastic leukemia) is the most common type of leukemia in children under the age of 15, according to the Leukemia and Lymphoma Society.

Leukemia is a cancer of the marrow and blood. Since Adam had the acute form, the disease rapidly progressed, and primarily affected cells that were not fully developed.

“With A.L.L. (acute lymphocytic leukemia) by itself, his chances were pretty good,” said Reed. “When they determined the other Philadelphia chromosome on top of that, that was the thing that made it hard to fight.”

The abnormal Philadelphia positive chromosome is where one chromosome attaches to another, which produces abnormal cells and proteins that are released in bone marrow, according to the National Cancer Institute.

Two to four out of 100 children with acute lymphocytic leukemia have the Philadelphia positive chromosome, according to the Leukemia and Lymphoma Society.

Adam, who was treated at Children’s Mercy Hospital in Kansas City by Dr. Alan Gamis, Children’s Mercy Oncology Section Chief, went through several rounds of chemotherapy and radiation, and had numerous blood transfusions.

“We were pretty much in the hospital every week but one for almost two-and-a-half years,” said Reed.

Adam also had two bone marrow transplants from donations from his sister, Kaitlyn – once when she was 9, and another when she was 11.

 “I thought it was kind of cool that I could at least try to make it better,” said Kaitlyn, now 15.

Even with a weak body and going through procedures and treatments, Adam still had a positive attitude. 

“He was a teenage boy stuck inside with a bunch of grown-ups and medicine. He was really isolated. And being 13 years old, you don’t want to be isolated from your friends,” Mary said. “He held in there. His attitude was mostly good. Of course, like everybody, you wonder, ‘Why does this happen to me?’”

Adam looked to his faith for guidance while he was going through his procedures.

“He was a trooper,” said Rod Lindemann of Rod’s Sports and Apparel, and a close friend to the Reed family. “For a young man of that age, he had the faith I wish everyone had – even myself. He knew where he was going and you never saw any fear of death in his eyes at all. He was never down.”

Adam’s parents, Jeff and Mary, looked to their faith as well.

“They were a great example of the Christian faith idea through everything,” Lindemann said. “It always amazed me how they could stay positive, even with four other kids.”



TRYING TO STAY “NORMAL”

Since Adam’s immune system was virtually powerless from the treatments, living accommodations had to be sterile.

In July 2003, a month after Adam’s first transplant, the Reed family packed up and moved into Adam’s father’s childhood home in Oak Grove.

“We repainted, got new carpet, everything. It all had to be redone,” said Reed. “Dirt and mold and everything else would be possibly deadly because his immune system was worse than an infant’s. I mean, he had none. He was so fragile for a long time.”

Mary, once a school teacher, home-schooled all five of her children. When Adam was sick, being home-schooled kept him away from harmful viruses and bacteria. 

“The biggest thing we were concerned about was germs,” Reed said. “Had any of the kids been exposed to the flu and brought it home it could have killed him. And really and truly, that’s the pressure that you live with.

“We were just able to keep him well and a lot safer. It sounds crazy but you have to do what you have to do.”

The Reeds were constantly alert through Adam’s sickness.

“It was a roller-coaster tornado the whole time. It was just surreal,” said Reed. “You think, ‘I’m used to this, I’m coping,’ but it has taken us several years after all to figure out we really weren’t living a normal life. There’s nothing normal about having all of that going on in your house.”



THROUGH IT ALL

Adam was the oldest of five children and relished in his role as a big brother.

“He loved to pick on us,” said Jenna Reed, 17, one of Adam’s sisters.

Picking on his siblings, however, wasn’t his only hobby.

“He was fairly quiet by nature, but he had friends everywhere he went,” Mary said. “He was easy to get along with, and liked to be busy doing something all the time.”

Adam engaged in many sports such as playing for a competitive soccer team, riding his go-cart and paint balling.

“He loved all that rough outdoor stuff,” said Reed.

Adam also danced with his brothers and sisters at Tiffany Performing Arts Center.

He excelled in break dancing, but was only able to perform with the team once, three days before he was diagnosed.

“He had returned to the team after his first transplant, and was gaining strength and looking forward to performing again,” said Reed. “He relapsed, though, and didn’t get to perform.”

Beckie Lucas, director of Tiffany Performing Arts Center, was Adam’s dance instructor.

“Adam faced the fight with courage and humor,” Lucas said. “He explained to everyone that crossed his path if he stayed longer here on earth with his family it would be a gift. But, after all, heaven was the ultimate gift. So, what did he have to lose?”

At the age of 12, Adam volunteered at his church, Timothy Lutheran in Blue Springs, doing the sound board for different musicals, shows, Vacation Bible School and Christmas programs.

“He caught on so quickly, it was almost unbelievable,” said Linda Kueck, sound tech volunteer at Timothy Lutheran Church and a close friend to the Reed family. “I never had to be concerned about anything when he was in charge. It was definitely his niche and most assuredly his gift.”

Adam worked alongside Lindemann at Timothy Lutheran for a musical performed by the teenage group LYFe-Lights.

“Adam was always humble being behind the scenes,” said Lindemann. “We had a lot of fun together.”

Adam was unable to work on the sound board for a production, and Kueck felt the loss.

“I had nothing but sound difficulties during that musical,” Kueck said. “When I told Adam about it, he smiled with a mischievous grin.”



A WISH COME TRUE

During his sickness, the staff at Children’s Mercy Hospital contacted the Children’s Wish Foundation International to grant a wish for Adam.

“Adam considered several ideas for a few days, and settled on the idea of seeing castles,” Reed said.

In January of 2005, the Children’s Wish Foundation International sent the Reed family to London.

“They set us up with airfare and a flat,” Reed said. “They also arranged for us to tour places and gave us spending money for food and souvenirs.” 

The Reeds toured Windsor and Warwick Castles, the Tower of London, Buckingham Palace and Adam’s favorite – Stonehenge.

“He was determined to see every inch of the place,” Reed said.

“He walked all the way around it and shot pictures from every possible angle, even though the wind was blowing like crazy, and we were all freezing.”

–––

In February 2003, Adam Reed was diagnosed with acute lymphocytic leukemia, Philadelphia positive. 

He died in May 2005.

He was 15.

 

ADAM’S ARMY BLOOD DRIVE

No one knows the importance of blood like Adam Reed.

Reed was diagnosed with leukemia in 2003 when he was 13 years old.

During his struggle with the disease, he went through many blood and platelet transfusions to keep him comfortable and, ultimately, prolong his life.

“Adam didn’t take the blood for granted,” said Adam’s mother, Mary Reed. “He knew and thought about the fact that every time he received blood that meant a person had given it.”

His sister, Jenna, came up with the idea to do a blood drive in Adam’s honor.

“I was 13 when he died,” said Jenna, now 17. “I guess I just wanted to figure out something I could do to help because I couldn’t really do anything.”

With the help of Timothy Lutheran Church in Blue Springs providing the venue, Red Cross, and friends and family of Adam, the Adam’s Army annual blood drive was made possible.

“We do the blood drive in early June, because that’s when the Red Cross starts running low and people forget to donate,” said Nancy Nowiszewski, director of care ministry at Timothy Lutheran Church.

When Adam was sick, there were countless individuals that did what they could to help.

They are known as Adam’s Army.

“He was into paint balling and all that army stuff,” said Kathy Wilbers, Adam’s aunt. “So we went with that name.”

Wilbers helped with updating people about Adam’s illness and looking after Adam’s brothers and sisters.

“I did what anybody would do,” said Wilbers.

Wilbers also put together an e-mail prayer chain called “Prayer Warrior” through Timothy Lutheran.   

When Adam was still in the hospital, Rod Lindemann of Rod’s Sports and Apparel, and a close friend of the Reed family, made shirts with “Adam’s Army” printed on the front and sold them at Timothy Lutheran Church for $10 to help the Reeds with their expenses.

“Our experience, for the most part, has been that people really want to help if they can,” Reed said.

Lindemann also hands out the same shirts to donors at the blood drive every year.

“People like to give where they see and feel a need,” Lindemann said. “The blood drive carries the legacy of Adam’s smile.”

 Even now, Adam’s Army still continues to grow.

“It started as our family, our church, close friends and people trying to support us at the beginning,” Reed said.

“From there, it grew.”

Of course, Adam’s Army isn’t just the people close to the Reed family.

“The blood drive is held to educate people about Adam,” Nowiszewski said. “People who donate are people who were touched by Adam and who he was but also the cause.”

This year’s blood drive proved to be most successful from the past three, collecting 63 usable units of blood.

“Now that his sisters and brothers are getting older, we’ve had a lot of teens getting involved donating blood,” Nowiszewski said.

The blood drive not only allows volunteers to help others in need, but to remember Adam.

“(It) allows us to share Adam’s story and faith every year, both with old and new friends,” Kueck said. “I believe his impact will keep going and getting larger as time goes on.”