What a mother’s love will do for patient of St. Jude
From the moment Megan saw the photograph from the adoption agency, she knew she would do anything for her new daughter — including help save her life.
June 08, 2023 • 3 min
Megan saw the little smiling face in a photograph attached to an unexpected email, and she knew.
Megan and her husband, Paul, had filled out all the paperwork, sat through interviews and attended training to adopt from overseas. They had requested a child with medical needs.
“We have access to incredible healthcare in our country,” Megan said. “We really felt like we could change somebody’s life.”
In May 2017, they were waiting to be matched with a child. The email arrived without warning.
From the moment Megan saw the first photograph of her from the adoption agency, she knew she would do anything for her new daughter.
The attached photograph showed the smiling face of a tiny girl, almost 3 years old, with short dark hair. In that moment, Megan thought, “Oh, there’s my heart.”
Megan and Paul had four sons. The boys knew the family was adopting, but their parents had shielded them from the ups and downs of the process.
Megan didn’t realize her youngest, Sawyer, 6 at the time, was behind her until she heard him say, “That’s my sister.”
About 10 miles away, Paul had someone in his office when he opened the email and saw the photograph.
“That’s my daughter,” Paul told his colleague.
“We all just knew that she was meant to be ours,” Megan said.
From that moment, Megan would do anything for her daughter — and she’d have to. To save her life.
‘Your love is no different’
Megan and Paul traveled to China in September 2017 to bring their daughter home. They would name her Maelin-Kate.
Waiting in a government office, Megan thought about how the adoption agency had prepared them for this moment, explaining Maelin might be wary. Megan and Paul would look different from people she knew and not speak her language.
Megan and Paul traveled to China in September 2017 to bring home their daughter, Maelin.
When Maelin appeared in the doorway wearing a yellow dress, Megan crouched down, a doll in one hand and lollipop in the other, Paul beside her.
Maelin went straight to them, walking off-kilter because one leg was longer than the other — and into Megan’s arms.
“It was absolutely no different than holding my boys the first time,” Megan said. “Your love is no different. It’s not less than. It’s the same exact feeling.”
Megan and Paul spent two weeks in China, getting to know their daughter.
Maelin loved swimming in the hotel pool and eating in restaurants. She delighted in everything, squealing with laughter. “She just embraced life,” Megan said.
She called Megan “Mama” and Paul “Baba,” Chinese for “dad.”
Their flight home to Alabama landed after midnight. Megan’s parents brought the boys to the airport to meet them, and Maelin hugged everyone, even the dog once they got home.
Her brothers instantly adored her, nicknaming her “Mae-Mae.” They’d later learn “little sister” in Chinese is “mèimei.”
“You can’t meet her and not love her,” Megan said. “She’s just so sweet and bubbly and adorable.”
Two weeks later, a pediatric orthopedist confirmed Maelin had hip dysplasia. She would need a series of surgeries that would put her in a body cast for months and her left hip back in its socket.
Megan had expected that. She hadn’t expected routine lab tests to turn up something else.
Maelin’s four brothers — Logan, Drew, Parker and Sawyer — are protective of their little sister. “She’s everybody's favorite sister, and they all think that they're her favorite brother,” their mother said. (Maelin won’t admit to a favorite.)
A devastating diagnosis
Maelin’s blood cell counts were unusually low, indicative that something was wrong, though not exactly what. Her pediatrician made an appointment for Maelin at the St. Jude Children’s Research Hospital affiliate clinic in nearby Huntsville.
Megan said a doctor there reassured her, “We’re going to figure this out.” On their way out, the doctor introduced them to the clinic’s medical director who asked to see Maelin’s test results.
She had worked at a clinic in Minnesota specializing in Fanconi anemia, a rare genetic blood disease, and recognized it in Maelin’s lab work. More testing confirmed it.
Fanconi anemia is a rare and serious inherited blood disorder that leads to bone marrow failure. It prevents bone marrow from making enough new blood cells for the body to work properly. Fanconi anemia can also cause bone marrow to make faulty blood cells. This can lead to serious health problems such as leukemia, a type of blood cancer.
There is no cure.
The first time Megan took Maelin to St. Jude in Memphis in December 2017, she recognized the building with a statue of St. Jude out front from TV commercials. She and Paul had been monthly donors for years.
“You just never think that you'll ever be here,” Megan said. She worried it would be scary and sad.
There was no doubt in my mind, I would do everything for this to work. She is my daughter
“It is all of those things, of course, but there's a lot of happiness there,” Megan said. “There's a lot of hope there.”
Even when it seems like there’s no hope.
Treatment would include monitoring Maelin’s blood and bone marrow and transfusions to increase her blood cell counts. She would need a bone marrow transplant.
Finding a donor wouldn’t be easy.
Searching for a donor
Patients usually find a donor among their relatives, but Maelin was adopted — and only a small percentage of potential donors on the national registry identify as Asian. None were a match for Maelin.
“There was no doubt in my mind, I would do everything for this to work. She is my daughter,” Megan said.
Megan and Paul teamed up with a national online donor registry in the hopes of finding a match for Maelin. Megan went to every donor drive within driving distance, taking Maelin with her.
“This is who you’re doing this for,” Megan told those who registered.
She posted on social media, emailed family and friends and gave newspaper and television news interviews — anything to get the word out.
Maelin makes regular visits to St. Jude in Memphis for checkups.
Someone told Megan she had a better chance of winning the lottery. She wasn’t deterred.
“Don’t tell me I can’t do it,” Megan said. “This is for my kid.”
Megan printed flyers and went to colleges, corporations and craft shows, anywhere there would be people. She spoke at churches with Chinese congregations, accompanied by Maelin’s pediatrician to answer questions. Saturday mornings found her in hardware store parking lots.
She carried swab kits in her purse and in her car.
“If you looked at me, I swabbed your cheek,” Megan said.
She estimates she signed up more than a thousand potential donors.
“I just fought for her,” Megan said. “I would do anything for her.”
‘Running out of options’
All the while, Maelin made regular visits to St. Jude. By summer 2018, her need for transfusions was growing increasingly frequent.
“We were running out of options,” Megan said. Maelin needed a bone marrow transplant — and soon.
That fall, a nurse practitioner from St. Jude called Megan to tell her that not only was there a potential match for Maelin, but there were three.
Maelin was admitted to St. Jude in spring 2019, 10 days before her transplant, to undergo chemotherapy and radiation treatments to destroy her failing bone marrow.
Megan was terrified Maelin wouldn’t make it. She only cried in the shower where Maelin couldn’t see her.
She worried Maelin would blame her. “Would she think, ‘My mom did this to me,’ and hate me?” she said. Most of all, Megan worried this ordeal would change Maelin.
She’s just such a little joy, I didn’t want her to lose that sweet spirit.
Maelin stayed in the transplant unit for more than two months instead of the expected 21 days, and then for another four months at St. Jude in family housing until she was healthy enough to go home.
She’d come back for checkups, every two weeks at first and then every month, two months and six months.
But they could pick up the life they’d started from that moment Megan first saw Maelin’s photograph and knew.
‘Best day ever’
Even after all she’s been through, 8-year-old Maelin finds a reason why each day is the best ever.
“She’ll say, ‘I see a butterfly — it’s the best day ever,’ or ‘We ate spaghetti for dinner — it’s the best day ever,’” Megan said. A new pack of crayons. Ice cream with her brothers. Petting the facility dogs at St. Jude.
“We joke that she has glitter in her veins because she's just the happiest, most loving, most excitable human on the planet,” Megan said.
“Even the littlest things that we wouldn’t find exciting, she thinks are just the best things ever.”
Maelin is an advocate for St. Jude, attending events and telling her story: “I was really sick, but my doctors and nurses helped me, and I love them.”
Maelin taught her mother that, to find joy in the small things, and more.
Every day is the best day ever, even the days when Maelin has to go back to St. Jude. People with Fanconi anemia are at high risk of developing other cancers, so doctors at St. Jude monitor Maelin closely.
“This place just has so many happy memories for her, and the people here are so good to her,” Megan said. For Megan, the visits are a chance to show gratitude.
“They truly saved my daughter’s life,” she said.
At St. Jude, Megan learned that even at the worst times, there is good. The medical staff and researchers who work tirelessly. The donors who give and keep giving. The pervasive feeling of hope.
“Hope changes things,” Megan said.
Hope for the best day ever.
