There have been setbacks along the way, but Jordan Flynn is doing well.
Two months after the Lewiston 14-year-old received a bone marrow transplant to help prolong her life, she is out of the hospital, gaining weight and feeling good.
"I am just so grateful for the people who get on the (bone marrow) registry and save people's lives," Jordan's mother, Doreen Flynn, said from New York, where Jordan is recuperating from the transplant.
And the family has another reason to be happy. It's now official: Some bone marrow donors can be legally compensated for their donation.
It's an adjustment in federal law that the Flynn family and others hope will encourage donations and save more lives — including, possibly, the lives of Flynn's other two daughters.
"I think this is going to be a huge change for people," she said.
Jordan was born with Fanconi anemia, a rare genetic blood disorder that destroys bone marrow and makes its victims extremely susceptible to cancer. Most FA patients develop bone-marrow failure and need transplants. Even with that transplant, they always remain highly susceptible to cancer.
Transplant success is highest with a sibling donor, but neither of Jordan's older brothers matched. Flynn and her then-husband decided to have another baby. With the help of in-vitro fertilization, they could all but ensure they'd have a child who was both a bone-marrow match and free of the disease.
But an error occurred during testing, implantation or both, Flynn said. When twins Julia and Jorja were born, both tested positive for FA.
The girls are 7. Jorja has already shown signs of the disease.
Without a sibling donor, the Flynn family had to look to a national bone marrow registry for a match for Jordan. This spring, that match was needed. Doctors found pre-leukemia cells in Jordan's marrow.
In April, a near-perfect match was found. Weeks later, Jordan entered Memorial Sloan-Kettering Cancer Center in New York for radiation and chemotherapy to prepare her body for the bone marrow transplant, then she underwent the operation.
Since then, there have been both strides forward and setbacks.
Jordan's white blood cell count jumped right away, her platelet count grew and the transplant took. After 40 days in the hospital, she was discharged to the nearby Ronald McDonald House, where she is staying with her mother while getting regular checkups at the hospital. A few weeks ago she got to meet singer Justin Bieber, an experience that left her uncharacteristically speechless.
Jordan also has had to battle infections and other medical problems, sometimes severe enough to land her back in the hospital. She lost her hair from the chemotherapy. She won't be allowed to return home until October or November, and only then "if all goes well and there are no more bumps in the road," Flynn said.
In all, the ordeal has been a lot more difficult than Flynn expected. The length of stay in the hospital, the complete isolation, took her by surprise.
At the end of June, the family got another surprise — this one good. The U.S Department of Justice said it would not appeal the 9th Circuit Court of Appeals' ruling that certain bone marrow transplants — those that involve syphoning cells from blood rather than drilling into bone for marrow — can be compensated. The department had 90 days to contest the court's ruling. On June 25, that 90 days ran out.
"This is a victory," said Robert McNamara, senior attorney at the Institute for Justice, the nonprofit, Virginia-based public interest law firm that spearheaded the suit. "It's a sea change."
Flynn was lead plaintiff in the suit.
Not everyone was happy with the decision. The nonprofit National Marrow Donor Program, which provides marrow to patients in need, contends the "congressional intent of National Organ Transplant Act of 1984 was clear, and marrow donors should not be compensated under any circumstances."
That act made it illegal for organ donors to be compensated. Flynn's lawsuit argued that advances in medicine make bone marrow donations more like plasma donations, which can be compensated, than like kidney donations, which cannot. The National Marrow Donor Program disagreed.
"We understand the challenging situation that the Flynn family faces," Michael Boo, chief strategy officer for Be The Match and the National Marrow Donor Program, wrote in an email, "but we do not support compensation for marrow donation as it raises a whole host of medical and ethical issues. We also believe that compensation of donors interferes with the current operation of the registry and our ability to work with other registries around the world, to the detriment of patients searching for donors."
He added, "Rather than compensating a single individual, we believe focusing on getting more people in the registry would be the most effective way to save more lives."
Flynn pointed out that experts say approximately half of donors back out before transplant. She's hopeful that compensation will give those donors incentive to go forward.
MoreMarrowDonors.org is being established to compensate donors. The program plans to give donors $3,000 in a scholarship, housing allowance or charity donation of their choice.
Both of Jordan's younger sisters will need bone marrow transplants when they get older. Julia could use the same donor as Jordan — if that donor is willing when the time comes.
"I'm crossing my fingers," Flynn said.