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Our champion Maddie's bone marrow transplant journey
July 4 is a day filled with anticipation and happiness for children throughout our country. This day for 6-year-old Madeleine Jane Stanton (Maddie), and our family, almost four years ago, was anything but exciting or happy.
It was on this day we found out our bright, beautiful and seemingly healthy daughter had leukemia. The symptoms leading to the diagnosis were opaque and confusing, ensnaring family practitioners, emergency room doctors, family and friends in traps of misdiagnoses. Symptoms began with periods of intense back pain, which was first mistakenly attributed to physical strain from gymnastics and a few days later changed to constipation. But after our final visit to the emergency room and subsequent hospital admission for treatment of the constipation, Maddie was still experiencing a frightening amount of pain and a low-grade fever. An MRI of Maddie’s spine was completed before she was to be discharged, but a suspicious spot on her thoracic region was detected. A biopsy was immediately performed and the results came in quickly.
These results were conclusive, unfortunately. It was the afternoon of July 4, 2014, and the doctors at our hospital in San Antonio told us our precious daughter had leukemia and it was aggressively attacking her spine. We therefore had to remain in the hospital and begin Maddie's chemotherapy induction the following day. On the night of her diagnosis, now on the pediatric hematology and oncology floor, our little Maddie was dancing and singing with glee because fireworks were partly visible from the windows in our room. We’ll never forget watching her beautiful, long brown hair silhouetted against the brilliant chrysanthemum-colored bursts of the rockets, truly feeling for the first time in our lives as if we had no control or ability, no matter how hard we tried, to fulfill our fundamental duty as parents: keeping our children safe and in good health.
In the interest of brevity, we will avoid trying to describe the abject fear, the ceaseless praying and the nearly maniacal focus on providing for your child’s every comfort. We will avoid detailing the many life-swaps fruitlessly negotiated with God and the numerous rhythms and cycles of the hospital, including the time between each helicopter arrival on the helipad and the various sound patterns emitted by the infusion pumps as they signaled audibly. These are things all parents learn in the first few weeks of cancer treatment; this becomes the new routine.
Maddie’s chemotherapy induction seemed to go well, and we were discharged from the hospital shortly after. We anticipated several stressful years of chemotherapy, but we also anticipated a successful outcome, owed to the incredible medical advances made in the treatment of standard-risk leukemia in the past four decades. Of course, we knew side effects from the chemotherapy would arrive and persist, but we were confident we could handle any issues thrown at us with hope and patience.
A few weeks later, we consulted with a gifted and trusted National Institutes of Health (NIH) oncologist and hematologist, a friend of ours, regarding Maddie’s condition and the quality of care she was receiving from our local oncologist. This is when we learned Maddie had an incredibly rare and high-risk form of cancer, hypodiploid acute lymphoblastic leukemia, and her oncologist had misinterpreted her diagnosis. We knew we needed to pursue an aggressive, alternative path to battle this type of cancer, especially because its reported average five-year survival rate was only 10 percent if treated with chemotherapeutics. Dr. Jason Levine, the NIH oncologist and hematologist, confirmed the statistics regarding this cancer variant. He immediately jumped into action on our behalf.
Dr. Levine mentioned he had just trained Dr. Rachel Rau, who was now working at Texas Children’s Hospital in Houston. We were in Dr. Rau’s office within a week of initial contact. Dr. Rau and her colleagues concluded that Maddie’s best chance for long-term survival involved an urgent bone marrow transplant. To our great fortune, Texas Children's is world-renowned for bone marrow transplants.
After meeting with Dr. Kathryn Leung at Texas Children’s, the bone marrow transplant team contacted Be the Match to start searching for potential bone marrow matches for Maddie. We finally knew we were in the right place.
Roughly 75 percent of bone marrow recipients don’t find a match with their siblings, which happened to be Maddie’s case. Thankfully, Be the Match found a perfect match for her in conjunction with Texas Children’s. The anonymous donor, a willing young woman who was medically cleared to donate, was quickly located and contacted. Maddie’s donor, who we now know as our “Dear Jess,” is a true lifesaver. She has been lovingly “adopted” into our family, and we sincerely hope to meet her in person in the near future.
The preparation required for the transplant was grueling, involving high-dose chemotherapy, an armada of supporting medications and nearly a week of twice-daily total body irradiation sessions at multiple facilities. This annihilated her diseased marrow and prepared a path for the incoming harvested bone marrow from Jess. All of this intensity clarifies a parent’s understanding of what really matters most in life and allowed us to see who “the helpers” are in this world. This was a difficult stage in the treatment course where we counted the passing of time second-by-second, rather than day-by-day.
Maddie’s bone marrow transplant occurred on Nov. 8, 2014, around 2 a.m. We were advised that this might appear anticlimactic. The transplant is similar to a blood transfusion instead of a solid organ transplant. Amazingly, the life-giving bone marrow cells seemingly appeared to be nothing more than blood. Maddie slept through the entire procedure, completely unaware of her parent’s deep pensiveness and prayerful disposition. Following the bone marrow infusion, the difficult part began as we waited to see if Jess’ cells would fully engraft and started to see the side effects of the intensive preparation. The radiation caused severe mucositis which was extremely painful for Maddie. Thankfully, she fully engrafted in about four weeks, but it took another few weeks for Maddie to successfully wean down from intravenous to oral medications. We were finally discharged to our home-away-from-home in Houston on Christmas Eve 2014.
We spent the next five months with Maddie in Houston as she recovered from the transplant. She started with three bone marrow transplant clinic visits weekly that were gradually reduced to twice a week, and she eventually was going weekly by May 2015. She completed first grade in Spring Branch ISD through their wonderful homebound education program. Ever hopeful, we began planning our move back home to Boerne, Texas, at the end of the school year, but life had other plans for our family.
As our plans began to solidify and moving schedules cemented, Maddie developed two secondary complications from the bone marrow transplant. The first appeared in mid-May, and the other followed a few weeks later. Both complications were rare. Moreover, the medical literature at the time had never documented simultaneous complications like these. The most significant complication was truly life-threatening. Our incredibly intelligent and talented physician, Dr. Kathryn Leung, immediately began an intensive application of novel therapeutics and constant, intensive treatment. By acting so quickly and thoroughly, Dr. Leung and her team in the Bone Marrow Transplant Unit saved Maddie’s kidneys and, very likely, her life. By Christmas 2015, both complications were medically under control and Maddie was finally healthy enough for Dr. Leung to be comfortable with us moving back home.
As any parent, family or close friend of a child battling cancer knows, the path to recovery is neither straight nor guaranteed. Each day, each hour, and often each minute dedicated to recovery is an arduous, soul-scorching (and always soul-affecting) battle. But institutions like Texas Children’s and all of the people who make it operate day-by-day make these journeys bearable and give those impacted by the most serious childhood illnesses and conditions tandem gifts of hope and confidence. With a premier team of dedicated and superb medical practitioners, researchers, nurses and support staff, we knew we could not have chosen a better institution for Maddie’s care. We always knew Texas Children’s operated as a tight-knit community of dedicated, focused helpers with a singular mission to serve sick children and their families.
Today, Maddie is a bright, happy and beautiful 10-year-old in fourth grade. She loves school, and excels in all of her subjects. Her favorite activities are twice-weekly dance lessons, arts and crafts, and spending time with family and friends. Each day, we give thanks to Dr. Leung, Dr. Levine, Dr. Rau, Vivian Wu, Jess (the selfless donor), to the anonymous thousands of people donating their platelets and blood, and to all the skilled, kind staff at Texas Children’s who work tirelessly to help their Maddies continue wonderful and meaningful lives.
On Friday, Feb. 9, Maddie and other patients from Texas Children’s Cancer Center will take the runway at the 10th annual Celebration of Champions fashion show and luncheon benefiting Texas Children’s Cancer Center’s Long-Term Survivor Program. More than your typical fashion show -- this is a “look at me now” moment for children who have seen dark days early in their lives in their fight with cancer. This memorable walk down the “Runway for a Cure” will feature Cancer Center patient champions escorted by Community Champions. To learn more, visit Texas Children’s Ways to Give website.
The cure for blood cancer is in the hands of ordinary people, and one simple action can be the difference that gives a patient hope for the future. If you’re interested in supporting the cause, join the bone marrow registry and find other ways to get involved with Be the Match here.