Patient Stories

Acute Myelogenous Leukemia Survivor

Jonathan Barbee

Jenna Gibson Acute Myeloid Luekemia Survivor
  • Diagnosed with AML before age 2 
  • Cured with unrelated/unmatched bone marrow transplant 

Jonathan Barbee is a healthy little boy. He was especially healthy until he got a bad sore throat, just before he turned two years old. 

“The doctor gave us antibiotics for him, but he never got better,” says Kevin Barbee, Jonathan’s father.

Taking their son back to the doctor, blood tests revealed that something was wrong. His body wasn’t able to fight back the infection. So they were sent to a local hospital and Jonathan received an immediate transfusion. It was then, on Jan. 17, 2001, that the Barbees learned their son had AML - Acute myelogenous leukemia.

“We were then advised to go immediately to Seattle Children’s,” Kevin recalls. “It was about four in the afternoon when they told us and they transported us there by ambulance. We got to Children’s at midnight, that’s when we met medical oncologist, Dr. Julie Park.”

Life-threatening condition
Jonathan’s disease put his life at risk – something that the parents of this young child found very difficult to accept. “Jonathan was too healthy for something like this to happen,” Kevin says.

Once at Seattle Children’s, the Barbees learned that the best chance of cure for their son was a bone marrow (hematopoietic cell) transplant. The Barbee children are of mixed races; their mother is from the Middle East and Kevin is from the United States, making it difficult to find a perfect donor match. Jonathan received donor cells from an unrelated/unmatched donor who lives on the East Coast.

“He was so little when he was diagnosed,” says Jonathan’s mother, Badee’a. “He was only 22 months old and they had a hard time finding a vein; that was scary and hard. When Jonathan was in the hospital, he didn’t understand what was going on. I think that made it easier.”

The nurses distracted Jonathan a lot with vital sign checks and such, “making him feel like the king with all of the attention,” Badee’a says. “The nurses were so caring and the volunteers were great there. They gave him things to do while he was sitting there with his IVs.”

Because of infections that he kept getting before and after the transplant, and because the first couple of chemotherapy rounds were unsuccessful, Jonathan ended up staying in the hospital for seven months. “And we never went outside in all of that time,” Badee’a says.

“The guy’s like a pincushion,” Kevin says about his son. “He gets a lot of blood draws. He also has trouble with graft-versus-host disease, mostly in his gut, but we’re told that should pass. Until then, he remains on immuno-suppressant drugs. He does go to school, but when Chicken Pox comes around, he runs.”

Life after transplant

Jonathan visits Seattle Cancer Care Alliance about once a month as part of the Pediatric Long-term Follow-up Program where he sees Dr. Jean Sanders, director of the pediatric bone marrow transplant services. “He and Dr. Sanders get along very well,” Kevin says.

Although it’s all he’s ever known, Jonathan knows he’s different than other children.

“He has some concern about the scars he has,” says Kevin. Like the side-to-side scar from when his spleen was removed, the scars from biopsies of various lymph nodes, and the central line scars – “He has several of those,” Kevin says. “He also knows that other people don’t take as many medicines as he does, and he doesn’t have the strength of other kids yet. But he’s growing and will catch up. He’s starting to recognize that he’s the same in many ways, too. He loves first grade, playing games on the computer, and is wild about penguins. And he’s great at building with Lego’s – good at geometric reasoning, like his mother, the architect.”

On May 29, 2007, Jonathan celebrated his “second birthday,” the anniversary of his transplant.  “Every year we try to contact the donor and send a picture of Jonathan,” Kevin says. “It’s also a few days from other family birthdays: Badee’a’s birthday is May 16, mine is the 26, and his little brother Joshua’s is May 25. The entire family celebrates birthdays all together.”

Kevin admits a certain surreal quality to the last several years, admitting that Jonathan’s illness-to-treatment-to-transplant happened all very rapidly and “out of left field.”

“I had heard a little about high-dose chemotherapy and bone marrow transplants long before my son was ill,” Kevin says. “I thought then that it sounded like a stupid idea to poison the body with drugs and radiation. But then I realized this was the only way for my son to live.”