The Nowlin family spent the summer of 2015 the same way as many families: playing outside, going to the beach, and visiting local attractions. With 5 kids, Meghan and Ryan Nowlin, were no strangers to the bumps and bruises their children would acquire, however what happened to their eight-year-old daughter Maisie, the couple never prepared for.
“On Labor Day weekend, we spent time at the beach and the kids played on a slip and slide,” says Meghan. “The next day, Maisie was covered with bruises. I attributed them to the slide and tree roots, but we walked over to see our neighbor — she’s a pediatrician — who said I should get Maisie checked out. I called our pediatrician who wanted me to take her to the emergency room. With five kids, we’ve been to the emergency room so many times, but somehow I knew this time we were in big trouble.”
Within an hour of arriving at Fairview Hospital, they were in an ambulance on the way to Cleveland Clinic main campus. “There was talk about leukemia, and Maisie’s counts, her counts, her counts,” says Meghan.
Following rounds of tests, Maisie was diagnosed with severe aplastic anemia, a rare and serious condition in which the body stops producing enough new blood cells. Symptoms include unexplained or easy bruising, fatigue, pale skin, frequent or prolonged infections, prolonged bleeding from cuts, skin rashes, dizziness, headaches and more. Aplastic anemia can progress slowly over weeks and months, or come on suddenly.
“Aplastic anemia occurs when the bone marrow is not making sufficient blood cells. Healthy bone marrow produces red and white blood cells as well as platelets. These three cell types originate from stem cells which exist in the bone marrow and keep dividing to make enough blood,” according to Maise's doctor, Rabi Hanna, MD, a pediatric hematology and oncology specialist and director of Pediatric Blood and Marrow Transplantation at Cleveland Clinic Children’s.
Dr. Hanna and his team are focused on helping children diagnosed with blood and other cancers, especially those that are high risk. “Patients like Maisie with aplastic anemia don’t have defected or unhealthy stem cells in their bone marrow to secure normal blood production.”
Treatment for aplastic anemia can include immune suppression medications, blood transfusions or a stem cell/bone marrow transplant.
“We were optimistic that with four other kids, one would be a bone marrow match, which has a 97 percent success rate in aplastic anemia patients,” says Meghan. “But none of our kids were a match. So we were faced with immunosuppressive therapy using medication, which has a lower success and higher relapse rate. I don’t know how, but I just knew this wasn’t going to work, and felt we needed to pursue finding an unrelated (non-family member) bone marrow donor,” said Meghan.
Meghan was right. Maisie did not respond to the immunotherapy.
The importance of the relationship that develops between the doctor, the care team of nurses and child life specialists, and the patient and family is beyond definition.
“From the bottom of our hearts, we’re really, truly thankful to everyone at Cleveland Clinic — the doctors, nurses, nurse practitioners, child life specialists, receptionists and others who have been part of this journey.”
“As we watched Maisie get sicker and sicker, we wondered if she was where she needed to be in terms of her care. I asked so many questions of Dr. Hanna and the entire care team, and they were doing everything they could, and she just wasn’t getting any better. We called other hospitals and researched other doctors, and call after call, no one compared to Dr. Hanna,” says Meghan. “He sat down with Ryan and me and told us that Maisie was his priority, and that he believed in everything being done to try to help her. He asked us to trust him. We realized then that he truly was there just for Maisie and that he wanted what was best for her. We realized how lucky we were that he is so smart and willing to work such long hours on our daughter’s behalf.”
From the beginning, Dr. Hanna worked to earn Maisie’s trust. He knew there were many things she’d have to do or experience that would not be easy or pleasant. But in return for her being strong, he’d promise something in return.
“We called them homework assignments,” says Meghan. “Dr. Hanna would give Maisie an assignment, like preparing to get a shot the next day, and Maisie would give him an assignment back. She really bought into that, and took advantage of it. She asked Dr. Hanna to dye his hair pink, to shave his head, to participate in dance parties in her room, and he did. In return, she loved him and was willing to do really hard things because he asked her to.”
“We started running marrow registry drives in the hope of finding donor,” says Ryan Nowlin. “We worked through ‘Be The Match’ and more than 600 people showed up for the first one. After that, we had friends and family all over the country holding drive after drive.”
Maisie’s health continued to deteriorate, and the longer she waited for a transplant, the higher her risk of infection. Fortunately, after a few months of waiting and searching for a donor, there was a match – a 24-year-old from Germany.
There are currently close to 19 million people in the worldwide bone marrow registry. If you’re not one of them, you can register via Be The Match, the national marrow donor program at bethematch.org.
Preparation for transplant takes time and involves many things. These included monitoring the condition of vital organs (including the heart and kidneys) and conditioning therapy that, in Maisie’s case, included chemotherapy, radiation and more.
“Following transplant, Maisie’s red and white blood cell and platelet counts were up. We were excited because things were going well — maybe too well,” says Dr. Hanna. “She developed a unique and rare complication where the donor product produced abnormal antibodies.” Put simply, Maisie’s body was fighting with the donor cells.
At this point, Maisie was running out of time, living a life that was not sustainable. Her parents were faced with the thought of having to talk to her about dying.
Dr. Hanna persisted, trying more and more medications. Eventually, he introduced a new medication typically used in adults. Maisie’s counts began to go up, and it has worked tremendously so far for her.
“It may not be the stereotypical “good life” — but it is still very, very good,” says Meghan. “From the bottom of our hearts, we’re really, truly thankful to everyone at Cleveland Clinic — the doctors, nurses, nurse practitioners, child life specialists, receptionists and others who have been part of this journey.”
This year Maisie was honored at the Cleveland Clinic Children's Gala as one of two Courage Award Winners dedicated to brave children facing and overcoming medical obstacles. Pictured: Dr. Hanna and Maisie.
Cleveland Clinic Cancer Center,
Digestive Disease & Surgery Institute