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Jonathan Buchanan donates bone marrow to twin brothers with sickle-cell anemia

7:34 AM, Sep 10, 2013   |    comments
The Buchanan brothers of Chandler, Ariz., (from left) Jonathan, 14, and twins Joshua, and Jordan, 16, hang out together in Jordan's bed at Phoenix Children's Hospital on Saturday, Aug. 31, 2013.(Photo: David Wallace, The Arizona Republic)
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(ARIZONA REPUBLIC) -- When Kristine Buchanan was pregnant with her fifth son, doctors told her he probably wouldn't live.

The boy had a cyst on his heart, they said. But Jonathan was born a healthy baby. Now, he's helping his twin brothers, both of whom have sickle-cell anemia, live without pain.

"When he was younger, he used to have this stuffed animal, a dog, and he would bandage the tail and patch the eye and take care of it," said Buchanan of Chandler, Ariz. "I used to joke that he'd be a doctor. He would say he was going to find a cure for sickle-cell anemia.

"Now he is the cure."

Sickle-cell anemia is a hereditary disease that affects the shape of red blood cells, said Dr. Dorothea Douglas, who treats the twins. Normally, red blood cells are shaped like doughnuts, allowing them to pass through the body and carry oxygen and nutrients. But patients with sickle-cell anemia have curved cells that cannot deliver oxygen and nutrients as well.

In the United States, 70,000 to 100,000 people have sickle-cell anemia, most of them African-Americans, according to the U.S. Department of Health and Human Services.

Last fall, Jonathan, 15, donated bone marrow to his brother Josh, 16, so that the transplanted marrow could create healthy red blood cells. Doctors say Josh is cured of the disease.

On Wednesday, Jonathan donated bone marrow again for Jordan's transplant.

"At first I was really nervous," Jonathan said. "I had to get all the shots, and I'm kind of scared of shots. But it got easier once they told me about it. I feel really proud to help them get better."

Growing up

Jordan and Josh were 17 days old when Buchanan, now 44, learned her boys were sick. She knew she carried the sickle-cell gene but didn't know the implications. Her two oldest boys were born healthy, so doctors never checked to see whether her ex-husband also carried the trait.

"For the first few years, I was in denial," Buchanan said. "I couldn't accept that my boys had this disease."

Shortly after the twins were born, Buchanan and her then-husband of 10 years began to grow apart because of the stress. During the separation, she realized she was pregnant with Jonathan.

"The doctors told me to abort him because of the cyst on his heart, but I couldn't do that," she said. "Here you have the child who wasn't supposed to be here, and now he's the perfect match for his brothers."

It wasn't easy for the boys growing up. The twins were in the hospital often, and the family had to skip holidays, birthdays and vacations, Buchanan said. When the boys wound up in the hospital, Buchanan's sister and ex-husband helped take care of Jonathan and his two oldest brothers.

"It's been very lonely having kids who get sick all of the time," she said. "I'm a single mother. You don't make plans, you can't date, you can't hold a job or see friends."

Sickle-cell anemia has caused the boys a lot of pain because the misshaped cells become stuck and can't move through the body. The average lifespan for someone with the disease is 35-40 years, Douglas said. The disease also makes the boys sensitive to changes in temperature and elevation and prone to strokes, joint trouble, organ problems and other illnesses.

"The quality of life can be poor," Douglas said. "You're in pain every day for the rest of your life."

Jordan said his pain is mostly in his neck and head, and it feels like there is something sharp in his head or a bone is out of place.

"I learned that that pain is in your head. My mom always told me it's mind over matter," Jordan said. "If you try hard enough, the pain goes away."

Jonathan learned how to help his brothers when they weren't feeling well and what medicine they needed to take. He also learned to accept their limitations.

"It was really hard at times (growing up). Most of the time, they would get sick or couldn't go outside," he said.

The boys missed out on sports and other physical activities. A bicycle ride in cold weather could land them in the hospital - and did the day after Christmas in 2009.

School was also a challenge. Besides missing class when they were sick, the boys were also trying to learn while taking strong painkillers - one of the ways to treat sickle-cell anemia in lieu of a transplant.

"They were taking things like Vicodin or Oxycontin. It eases the pain but it makes them tired," Buchanan said. "They had to learn how to focus under the influence and get a good grade."

The procedure

Blood cells are created by bone marrow, so healthy marrow was harvested from Jonathan and transplanted to Jordan, Douglas said. Jordan also went through a pre-emptive regimen of chemotherapy to remove the sickle cells.

"It's like a factory. The machines aren't working right, so we're replacing the machines," Douglas said.

Other doctors suggested a bone-marrow transplant when the boys were young, but Buchanan said she declined because she "was naive and had a bad feeling about it." But doctors suggested the procedure again when the twins were almost 15 years old because they were in and out of the hospital so often.

"One boy would be in, and as soon as he was feeling better, the other would get sick. Or they would both get sick," Buchanan said. "It was hard trying to pick what room to spend time in or sleep in. I'd go to one room, and the other (boy) would call me and ask me to come over."

Doctors tested the twins' three siblings to determine if they were a match. The two oldest brothers were not able to donate, but the family found out in June 2012 that Jonathan could.

"I was sitting down with a cup of coffee when I got the call and I just started crying. I didn't know what to feel," Buchanan said. "I was like, is this for real? Am I being punked?"

To ease the recovery from surgery, for the family and for the boys, only one son at a time would receive the transplant.

To decide who would go first, the boys settled it "like boys do": rock, paper, scissors.

Josh won the game, and Douglas decided he should go first anyway because he was in more pain. He had his transplant in October 2012.

"I watched his face change from someone who is angry and always feels pain to someone who is happy," Jordan said.

Josh and Jordan are identical twins, so Jonathan was able to donate bone marrow for both of them. For each transplant, he spent the day before in an operating room and had the marrow taken from his pelvis.

"I had a feeling when my two other brothers were tested and couldn't do it (that) it would be me," Jonathan said. "I prayed and prayed it would be me."

Jordan began his stay at Phoenix Children's Hospital on Aug. 25 and will stay for six to 10 weeks. He slept through most of the nine-hour transplant on Sept. 5. His hospital room has a TV, an Xbox 360, a MacBook, toys and a stationary bike to keep him busy during the stay.

"This whole process is utterly a blessing," Buchanan said. "I'm so grateful for the doctors and nurses at Phoenix Children's Hospital. They make us feel so welcome."

Moving forward

Jordan will spend several weeks in the hospital as the new bone marrow multiplies and his immune system recovers from the chemotherapy. It can take up to 10 days for his body to accept the marrow.

"We kind of own him for now," Douglas said. "He has to do everything I say."

Douglas said Jordan will be uncomfortable as his body recovers, but it'll be worth it because "not having pain every day is a real life-changer."

"I'm ready for my cells to multiply so I can go home and get back to my friends and family," Jordan said.

Buchanan will stay with Jordan during the entire treatment; she's sleeping on a reclining chair in the corner of Jordan's room, and his brothers will visit often.

Jordan will also have to be weaned off the painkillers, just as his brother was. Douglas said after taking narcotics their whole lives, the boys can't stop taking the medicine cold turkey.

Jonathan never asked for attention or gloated about helping his brothers, Buchanan said. When Josh was getting the transplant, Jonathan wasn't acknowledged for helping, but this time, all his friends and family gave him gift cards to his favorite restaurants.

"This year, they congratulated him for his heroism because that's what he is, a hero," Buchanan said.

Jonathan told his mom he would donate his marrow a million times if it would make his brother better. A day after the bone marrow was harvested for Jordan's surgery, Jonathanwent swimming with Josh for seven hours, Buchanan said.

Buchanan knows her boys are about to spend the next few years catching up on everything they couldn't do before.

When Josh's health improved, he created a bucket list of everything he couldn't do before - such as climbing a mountain, Buchanan said. When he was cleared to drink soda, he drank so much he made himself ill.

Josh began attending public high school Monday in Chandler. He had been homeschooled after his transplant in October. Jordan will be homeschooled after his hospital stay until August, when he will start his senior year in public school.

Jonathan is looking forward to playing basketball with his brothers after Jordan's recovery. He said Josh has improved in the few months he's been able to play.

"Now, they won't get sick or hurt unless I push them," he said, smiling.

When everything is said and done, Buchanan wants to go on a vacation, something she hasn't been able to do since the boys were born.

"I want to do something big, and I'll probably turn off my phone," she said.

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