Bridgewater boy, 6, donates bone marrow so his 8-year-old brother can live

By Jen Lynds, BDN Staff
Posted March 17, 2014, at 4:57 p.m.

BRIDGEWATER, Maine — As a student finishing up her nursing school studies last year, Lisa Scott was busy learning about the diseases that would afflict the patients that she would care for, the medicines that would treat their illnesses, and the survival rates for those diagnosed with diseases for which there was no cure.

At no time did the Bridgewater woman think that she would have to take the information that she had learned and apply it to her 8-year-old son.

But that is what happened to the Scott family, when Lisa and Clark Scott’s son, Colby, suddenly became very sick. The illness that he was diagnosed with required extensive treatment at Floating Hospital for Children at Tufts Medical Center in Boston, treatment that was made easier thanks to Angel Flight Northeast, a nonprofit that coordinates free air transportation for patients to access life-saving medical care.

Lisa Scott said during an interview last week that while she noticed last spring that her son was more tired than usual, it was Colby’s second-grade teacher who really alerted her that something much more serious might be going on.

“She called and told me that he was slipping in school, and that he seemed really weak and just not his usual self,” Scott said. “She was a big part of it. I brought him to a doctor in Presque Isle because of severe bruising, fatigue and nose bleeds. After a blood test they rushed him by ambulance to Eastern Maine Medical Center in Bangor.”

Colby spent three days at EMMC and was critically low on red blood cells, white blood cells and platelets. He underwent two red blood cell transfusions and a bone marrow biopsy, in concert with other tests, before he was allowed to go home. Doctors diagnosed him as suffering from a virus called Parvovirus B19.

Twenty days later, however, Colby was back, needing more platelets and red blood cells, and soon needed transfusions of platelets every 7 days. Scott said that her son also had back pain, leg pain, severe headaches and spontaneous bleeding of his nose and gums. After a second bone marrow biopsy on July 11, the family was told that Colby had severe aplastic anemia. Less than five percent of his bone marrow was working, and if he did not get a bone marrow transplant soon, he would die.

“At that moment, I was the most frightened I had ever been in my life,” Lisa Scott recalled. “More so because I had been through nursing school, and I knew. I just knew. I knew that he had no ability to fight infection, no ability to stop himself from bleeding to death. I knew that the bone marrow transplant was the only option. There was no other medicine, no other treatment. If he did not get it, I was going to be burying my son. That transplant was the only option for this little boy.”

The next day brought even more depressing news. While Clark and Lisa Scott and their other son, 6-year-old Carson, were tested as bone marrow donors, doctors told them that there was only a 20 to 25 percent chance that any of them would match as a successful donor.

“My children are so different,” she said. “One has brown eyes, one has blue eyes, one talks a lot, one is quiet. They have different hobbies. They don’t really look all that alike.”

But as she found out four days after that testing, their bone marrow is a perfect match.

“They matched perfectly for tissue and blood,” she said. “I was jumping around the house and screaming. I was over the moon, and so was Clark and Carson.”

And that is where Angel Flight came in. Created in 1996, Angel Flight NE covers nine states: Connecticut, Maine, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island and Vermont. Since it was started, its mission coordinators have scheduled more than 65,000 flights, and its more than 1,000 volunteer pilots have flown more than 13 million miles to give more than 62,000 patients and families free air transportation to medical care.

Scott said that the family had never been to Boston before, and Lisa and Colby had never flown before.

“It was great,” she said. “They made us feel so comfortable, and they have someone right there at the airport to pick you up and take you to the hospital for the procedure. And when it’s over, they take you back to the airport for the flight. We even had a delay in surgery and it was not an issue.”

Scott said that Angel Flight also flew Clark and Carson Scott down for the procedure in which Carson donated his bone marrow to Colby, a plane ride which Carson spent happily looking out the window. In total, Angel Flight NE volunteer pilots and PenAir at Northern Maine Regional Airport in Presque Isle coordinated nearly 20 flights over a 6-month period for the family.

“Angel Flight was wonderful,” said Scott. “We did drive to Boston at times, but it was a blessing to have them because Boston is a 7½- hour drive from Bridgewater. It was exhausting at times with a very sick child to do that.”

Scott said that Carson did not mind donating his bone marrow at all. The procedure involved being poked 25 times on each hip to withdraw the bone marrow.

“Once he was out of the operating room, he just said, ‘I am fine, just bring me to my brother’s room,’” she said. “They were always close before, but Carson is so much more protective of him now. He runs to him the first thing when he gets through the door after school. He loves telling people that he saved his brother’s life, and Carson is Colby’s hero.”

Colby is progressing well but cannot go back to school yet, and he still has to return to Boston for checkups once a month. He has been granted a wish through the Make A Wish Foundation, and in September Colby and Carson are going to stay at Give Kids the World, and visit Disney World in Florida.

Scott said that the community has thrown tremendous support behind them during this entire process with prayers, cards and fundraisers. Even though things are progressing well, her thoughts sometimes drift back to the times when she would be staying in the Boston hospital room with Colby, and Carson and Clark would have to leave to go back to their home in Bridgewater.

“Colby’s smile would instantly disappear,” she remembered. “But I don’t even like to think of where we were back then. Now, I see a smile on his face every day. And I like that.”

For more information on Angel Flight NE, log on to their web page.

http://bangordailynews.com/2014/03/17/news/aroostook/bridgewater-boy-6-donates-bone-marrow-so-his-8-year-old-brother-can-live/ printed on November 27, 2014