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Norah’s Story

Age: 14

Diagnosis: Acute Lymphoblastic Leukemia (ALL)

Age at Diagnosis: 13

Favorite Things: soccer, watching baseball, and swimming

Meet fourteen-year-old Norah, the 2023 TMJ4 MACC*Star designer. She is a four-sport athlete who loves playing soccer, watching baseball, swimming, and hanging out with her tight group of friends. With a zest for life, always energized for the next thing— Norah keeps her family on their toes.

But Norah’s active lifestyle came to a screeching halt in July of 2022 when she began experiencing sharp stomach pains. After a few days of consistent discomfort and a newly-developed fever, Norah’s mom, Emily, became concerned about appendicitis. She opted to take her to the doctor for a check-up before Norah hit the road for a 5-day national softball tournament in Minneapolis.

That day, a CT scan revealed Norah had an enlarged kidney with fluid accumulating on it. She was sent to a urologist at Children’s Wisconsin for a series of tests that would last the whole next day. Emily thought that maybe the kidney issue was related to a hard hit that Norah had taken in soccer a few weeks earlier, the likelihood of anything more severe never really sinking in. Finally, at the end of that long day, a doctor sat them down with the news that Norah had abnormal bloodwork and would be transferred up to the 5th floor: the MACC Fund Center for Cancer and Blood Disorders. In that moment, Norah’s mom experienced shock, which was quickly followed by terror. “No one expects this kind of thing to happen to their child. My mind just went to another place,” she explained. Soon after transferring units, the official diagnosis came- Acute Lymphoblastic Leukemia (ALL). The next day, Norah’s central line was placed for her to immediately begin the first round of what would be a two-year chemotherapy regimen.

Soon after diagnosis, more sophisticated genetic testing revealed Norah’s blood contained the Philadelphia Chromosome (Ph+). While this mutation is considered rare in pediatric ALL, it is much more common in adult presentations of ALL. According to Dr. Gordon Cohen of John Hopkin’s Children’s Center, “Historically, pediatric Ph+ ALL patients had been very difficult to cure with standard chemotherapy. Survival rates were only around 30%, compared to survival rates of most pediatric ALL patients of more than 85%. It was not until recently, when a new class of drugs that directly target the Philadelphia Chromosome were developed, that survival rates doubled to about 70 percent.” Thanks to this breakthrough in research and the development of a targeted therapy, Norah has remained in remission throughout her entire cancer journey, despite the presence of what was once considered a high-risk mutation.

Though Norah’s chemotherapy has been incredibly effective, the road has certainly not been a smooth one. Two months into treatment, she was diagnosed with Wolff-Parkinson-White Syndrome, a congenital heart defect that causes sudden-onset episodes of a rapidly pounding heart that can last a few seconds, minutes or even hours. Norah described these episodes as feeling like her heart was coming out of her chest. Twice, these episodes required her to be transported to the emergency department’s trauma center for stabilization. Once, she was even given medicine to stop and restart her heart to end an episode. To make matters worse, because this pre-existing condition was triggered by Norah’s nausea medication, she had to stop using them, putting nausea at the forefront of Norah’s challenges throughout her entire treatment. Consistent vomiting and loss of appetite ultimately made an NG tube necessary so that Norah could receive liquid nourishment. And frustratingly, keeping that tube down with her persistent nausea became its own struggle.

Another challenge early on in Norah’s treatment was the development of “foot drop”, a common condition caused by her chemotherapy that makes it difficult for the patient to lift the front part of their foot. Norah began sleeping in her mom’s bed on the first floor of her home because she couldn’t make it up the stairs. And soon, this four-sport athlete stopped walking. It would take months of physical therapy to rebuild her strength.

As a parent, it was awful for Emily to watch her daughter lose things that most kids can simply take for granted. And for Norah, this journey was a physical and emotional rollercoaster. Between treatments, she would find her strength and energy returning only to be knocked back down again by the next round of chemo drugs. Her hair would fall out and just when it would start growing back, it would fall out again. Infections, mouth sores, severe back pain, 2-3 nights per week in the hospital, and 15 spinal taps in that first year of treatment—it was a lot.

During the most rigorous portion of Norah’s treatment, she missed a full year of school. Throughout this isolating time, she found strength in the care and support of her incredibly close family and friends. Her friends would come visit in the driveway or join Norah on walks when she was immunocompromised. Norah’s older sister, Grace, would come home during her lunch period to keep her company. Norah filled the long days with Gilmore Girls, adult coloring books, movies, puzzles, and schoolwork all while watching the clock for when her sister would walk through the door at the end of the school day. Grace’s companionship was everything to her during this time.

But now that Norah is in the easier Maintenance phase, she is finally able to attend school and be with her friends again. She is also relieved to not feel behind academically. Being a self-motivated student, Norah was incredibly regimented with her schoolwork even when enduring the harsh side effects of chemo. And, with her nausea finally gone and her port removed, she was thrilled to be able to play on the soccer team again this fall. Unfortunately, the season was cut short for her due to an injury on the field, but she hopes to join another sport again soon. She’s not sure exactly what she will try next, but whatever she does, this tough girl will undoubtedly make it happen.

Most recently, Norah designed the 2023 TMJ4 MACC*Star with a design that beautifully reflects the optimistic outlook she maintained throughout her cancer journey- a sunny beach scene surrounded by the words, “Sky Above, Sand Below, Peace Within”. Emily said, “Norah’s design was inspired by her love for the beach and outdoors. During her hardest days we would often sit in the hospital, dreaming of the day when we would again find peace and comfort in the warm sunshine, toes in the sand, listening to the ocean waves. She knew all along that she had to just keep putting one foot in front of the other and keep going, no matter how hard it was.” Right after Christmas, Make-A-Wish Wisconsin will ensure Norah gets her toes in the sand with a family trip to the beaches of Hawaii. Norah is hoping for a full trip—swimming with manta rays, attending a luau, parasailing, island hopping—all the best things in the sun to get her through the final months of treatment.

This summer, when Norah finally rings the bell—a symbol of victory at the end of treatment—it will be a victory made possible by recent advances in research funded by donors like you. Research that gives warriors like Norah reason for hope and peace within.

Thank you for supporting research. Thank you for giving hope.

Copyright protected work of the MACC Fund. May not be used or distributed on behalf of any other organization or commercial purpose without MACC Fund’s explicit consent.

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