TRENTON — One day late last year, Melanie Gartner noticed how pale her 8-year-old daughter Journey looked. She had a cold that seemed to linger forever along with the cough that came with it.
Her doctor addressed the cough, Melanie said, but when she mentioned Journey’s pallor, he ran a blood test.
“He called me an hour later and said, ‘Why don’t you have a seat so we can talk,’” she recalled.
So began a journey no parent wants to take. Journey was eventually diagnosed with myelodysplastic syndromes (MDS) after a bone marrow biopsy at Northern Light Eastern Maine Medical Center on Dec. 29.
The MDS Foundation defines MDS as “an often unrecognized, under-diagnosed rare group of bone marrow failure disorders, where the body no longer makes enough healthy, normal blood cells in the bone marrow. The disease is also known as a form of blood cancer.”
“I was absolutely terrified,” Melanie said. That feeling was familiar, as she had been diagnosed with breast cancer last year, “but even more so because she’s my little girl.”
This was Journey’s first overnight from home, she said.
“I was scared to go in the hospital,” she said, but her mother stayed with her, and the hospital staff treated her kindly.
With her diagnosis confirmed, Journey next was seen by doctors at Boston Children’s Hospital in January.
“We took the whole family,” Melanie said. She wanted Journey’s two younger brothers to see the hospital and “have an idea where their sister and Mom were going to be for a long time.”
Once doctors reviewed her bone marrow biopsy, they asked her to return because of a high number of cancer cells, Melanie said. Journey had surgery to place a port in her chest for chemotherapy drugs, which she took for five days.
“She did beautifully,” Melanie said. “Hopefully it wasn’t so scary because she saw her mom had cancer and now it’s her turn.”
Doctors also discovered that Journey’s MDS developed from a genetic mutation, possibly inherited, David Gartner said. He also did his own research.
“One thing that was a big shocker of me — you try not go down that rabbit hole of internet investigations, but I looked it up and the doctor confirmed that the average age of an MDS diagnosis is 71 years of age. So, the fact that Journey has it at 8 is really rare,” he said. That rarity also means that while there is much information on MDS in older people, “when it comes to kids, they don’t know exactly how it works.”
One thing was clear: Journey needed a bone marrow match for a transfusion to replace the cells in her blood. To find a donor, the Gartners held a stem cell registry drive with national organization Be The Match on Feb. 6 at the Church of Jesus Christ of Latter-day Saints in Ellsworth.
“One in 300 [people] is a potential match, so it’s just a matter of getting the awareness out there so people know,” David said. “We’ve got to get a swipe inside the cheek with a cotton swab, that’s all a matching test takes.” The drive is still active online: text MightyGirl to 61474 to contribute a possible match.
But good news came first. Journey has already found her bone marrow match in her 2-year-old brother Ezra.
“At first I thought Melanie was teasing me because it was so quick,” David said. “It was one of those surreal, you’re kidding me moments. I was in my head planning on this long process to find one and was there even going to be [a match]. That’s why I had originally reached out to Be The Match.”
Ezra is not guaranteed as a donor until he is tested to make sure he does not carry the same genetic mutation. “Once he genetically gets cleared, there’s about a week for both Journey and Ezra to have testing and physicals to make sure they’re both healthy enough.”
Journey and Melanie will then spend 30 days in Boston, first preparing for the bone marrow transfusion.
“Ezra will be admitted for one day, and they will actually take bone marrow from both hips. That’s how they get the donation,” David said. “That same day, Journey gets an infusion. And then she gets his bone marrow cells into her and it regenerates into healthy bone marrow. We hope.”
Correction: A previous version of this story misidentified Journey’s hometown.