Lewiston teen recovering after bone marrow transplant

Jordan Flynn (center) and her 8-year-old twin sisters Jorja (left) and Julia have Fanconi anemia, a rare genetic blood disorder that destroys bone marrow.
Daryn Slover | Sun Journal
Jordan Flynn (center) and her 8-year-old twin sisters Jorja (left) and Julia have Fanconi anemia, a rare genetic blood disorder that destroys bone marrow.
By Lindsay Tice, Sun Journal
Posted Jan. 01, 2013, at 6:42 a.m.

Last spring, 13-year-old Jordan Flynn was losing her battle with a rare genetic blood disorder and facing a harrowing treatment that could prove just as deadly as her disease.

Eight months and one bone marrow transplant later, Jordan, now 14, is back home, back to school and getting back to health.

“Everything looks great,” said Jordan’s mother, Doreen Flynn. “Her counts are normal, finally. She has fully engrafted the donor’s cells. So basically now it’s just a matter of the functionality of those cells, making sure they’re fighting off everything on their own.”

The Sun Journal featured Jordan and her family in an April story about their struggle with Fanconi anemia, or FA, a blood disorder that destroys bone marrow and makes patients extremely susceptible to cancer. Both Jordan and her sisters, 8-year-old twins Julia and Jorja, have the disease.

Most FA patients develop bone marrow failure. A bone marrow transplant can fix that problem, but patients will always be at very high risk of developing various forms of cancer. Last spring, Jordan’s illness had progressed to the point that she needed that transplant.

At the same time, Flynn was suing the federal government to allow bone marrow donors to be compensated — a change in law that she and others believed could increase donation.

This summer, Jordan got her transplant at Memorial Sloan-Kettering Cancer Center in New York. And her mother won her court fight — the U.S Department of Justice said it would not appeal a court ruling that allowed compensation for bone marrow transplants that involve syphoning cells from blood rather than drilling into bone.

Since then, Jordan has had her ups and downs. Good days visiting with friends and family were interspersed with bad days fighting off viruses and infections. In October, she developed an infection so severe that doctors said it could have killed her.

“We happened to have been in New York [for treatment] when it was caught,” Flynn said. “They said had we gotten in the car, she would have died on the way home.”

But Jordan recovered. She recently started her freshman year at Lewiston High School.

“She loves it. She’s a social bug anyway. She was feeling left out being at home, with her friends doing extracurricular activities. So now that she’s in school, she feels more involved and more in the know,” Flynn said.

Jordan continues to commute to New York for treatment and monitoring once every three weeks. If all goes well , that will be reduced to once a month, then once every other month.

“It’s a slow process the first year,” Flynn said.

Jordan’s sisters are doing well, too, though Jorja’s platelet counts are low enough that she’s dipped into a danger zone. She must undergo a bone marrow biopsy every six months.

The family appeared on “Rock Center with Brian Williams” over the summer. The response was overwhelming — and almost all of it was positive.

“People were finding me on Facebook. They were Googling me. They found my email address from an old Florida article,” Flynn said. “It took a while to catch up. I responded to everybody.”

Now the family, including Flynn’s sons, her fiance and his children, are looking forward to life getting back to normal. Or at least as normal as it gets with FA.

“I just want to say thanks for everybody’s support throughout,” Flynn said.

 

https://bangordailynews.com/2013/01/01/news/lewiston-auburn/lewiston-teen-recovering-after-bone-marrow-transplant/ printed on July 10, 2014