Mandy Catoe
mcatoe@thelancasternews.com
March 3, 2017
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| Photo from Madie |
The 12-year-old is now on the winning side of a two-year fight for her life. It's a battle that has won her a place in medical history.
Madie is the first person born with a rare form of leukemia and is now the disease's longest-living survivor.
Until two years ago, chrono neutrophilic leukemia (CNL) had only been found in adults 65 and older and had a two-year survival rate.
A revolutionary discovery at Levine Children's Hospital in Charlotte and a bone marrow transplant saved Madie's life. She is now leukemia-free and expected to make a full recovery.
Madie's parents, Monica and Chris, along with her older brother, Rylan, gathered around Madie in their Heath Springs home last month and shared their story.
"We knew God had a plan for her," Monica said.
The side-effects of the bone marrow transplant have called on every ounce of resolve in the pre-teen and her family. Her mom quit her job to devote all her time to Madie, and her dad works as many hours as possible at Invista in Lugoff.
"It's been really hard to see her sick," her dad said.
Making medical history
Until two years ago, Madie was the picture of health. She was born with two times the normal level of white blood cells – a discovery made when she was 4 months old at a routine medical appointment. Her doctor referred her to Dr. Daniel McMahon, a specialist in hematology and oncology at Levine Children's Hospital.
McMahon ordered a bone marrow biopsy, which came back negative for leukemia. She remained symptom-free until just after her 10th birthday, when her spleen became enlarged. Another bone marrow biopsy and advanced genetic testing done in the summer of 2015 revealed the cause.
She had a genetic mutation that up to that time had been found only in those elderly patients with CNL.
"No one has ever been born with that gene being abnormal, so we didn't really have a great feeling for what would go on later in her life," McMahon said.
Doctors feared continued mutations would lead to a very aggressive form of leukemia. The only possible cure was a bone marrow transplant. That news shocked the DeBruhls, who had been told that a marrow transplant would be the last treatment option if Madie developed leukemia. That was before the mutation was discovered.
"They told us it would just keep mutating, and if we didn't do something she would get really sick," Monica DeBruhl said. The last option now became the first step necessary to save her life. The search for a matching donor began.
Her 14-year old brother, Rylan DeBruhl, volunteered without hesitation.
"He was a perfect match, and we thank the good Lord for that," his mom said.
"I wanted to do it because she's my sister," Rylan said.
Madie was a fifth grader at Kershaw Elementary that year. She was in junior beta club, student council and a library helper.
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| Photo from Madie |
Madie was hospitalized May 10 for eight days of chemotherapy. The two-hour transplant took place May 20. After the surgery, she stayed in a germ-free room for a month.
She came home June 20, but had to return to Levine a week later. She was in excruciating pain.
Complications
The reaction, called graft versus host disease, was a positive sign, proof that her brother's cells were killing off the cancer cells in her system. The side-effects were affecting her liver, bladder and skin.
Medications harmed her kidneys and hindered her body's ability to regulate blood pressure. Steroids weakened her bones and made her once-slim cheeks puffy.
She was released from the hospital July 30.
Since then, she has made twice-weekly trips to Levine for ECP, extracorporeal photopheresis, which treats the graft versus host disease. A machine draws her blood out, treats it with a liquid medicine and exposes it to ultraviolet light, which kills the diseased cells. Sometimes that process takes all day and includes a four-hour-long red blood cell transfusion when her hemoglobin is too low for the ECP.
Her mom said these treatments will continue for the next few months and hopefully be done by fall so she can start seventh grade at Andrew Jackson Middle School.
Madie celebrated her 12th birthday this past January and became the longest-living survivor of CNL. The doctors at Levine Children's Hospital and Levine Cancer Institute gave her a birthday party complete with an elephant cake and TV interviews.
"This is her first birthday ever without the abnormality in her blood," Dr. McMahon said.
Madie has changed medical science. From this point on, children with an unexplained high white blood count will have genetic testing to determine if they have the mutation that will lead to CNL.
"Our patient is the youngest ever reported patient and the first cured patient of this disease," said Dr. Belinda Avalos, a blood-disorder specialist at Levine Cancer Institute.
Gratitude, life lessons
As Madie's parents shared the medical side of her story, she and Rylan sat on the floor playing a board game, beneath shelves of last year's school pictures showing her with straight, shoulder-length hair.
The family expressed gratitude for community support and fundraisers from the kids' schools and their church, Fork Hill Baptist.
A homebound teacher has helped Madie stay on track with her sixth grade school work.
Madie's journey can be followed on the Facebook page, Team Madie, as well as on her GoFundMe page. When Madie is well enough, she will visit Disney World – a gift from the Make-A-Wish Foundation.
"I will be able to see the elephants," Madie said, smiling ear to ear.
The DeBruhls are proud of both their children.
"We have learned to make the most of each day," Monica said. "There is no way I could have been as strong as Madie. We just knew that God had his hands on her and he was going to take care of all of us."
Madie is sure she is here for a reason, too. Her favorite Bible verse adorns the Team Madie shirts. It's Jeremiah 29:11 and Madie is certain God is watching over her and has plans for her future.
She is ready to return to a normal life of sleep-overs and venturing outside without her face mask. And for her hair to come back in full, thick and straight.
https://www.gofundme.com/vehj6gb6
Follow Reporter Mandy Catoe on Twitter @MandyCatoeTLN or contact her at (803) 283-1152.
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