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Ada’s Story

Diagnosis: AUL and AML

Favorite Things: getting messy with slime and shaving cream, riding her tricycle, doing fun experiments

Meet Ada, a little girl from Waunakee with a deep joy for life and a genuine love for people. Ada loved getting messy, especially with her favorite mediums- slime and shaving cream. She could often be found tearing around the halls of the hospital on her tricycle or sitting at the nurses’ station casually catching up on her charting and answering the phones. The very best sister, she showered affection on her little sister, Ellie, and loved doing fun experiments with her older brother, Oliver. Little Ada left a lasting impression on anyone fortunate enough to meet her.

Ada’s cancer journey began in the spring of 2022 when she was just three years old. She started experiencing a series of unexplained low-grade fevers as well as significant bruising on her shins and back. Her daycare teachers mentioned that she seemed unusually tired but otherwise still healthy and easygoing. The turning point came when her parents discovered a huge bruise on Ada’s back. Worried, they brought her in to see her pediatrician. The doctor, who was aware that both parents had a PhD in biology, was straightforward with them. She wasn’t comfortable with what she was seeing- unusual bruising, fatigue, newly developed petechiae, and low-grade fevers. The doctor candidly stated the possibility of blood cancer and ordered a comprehensive blood test.

Late that night, Tami and Joel received the phone call that would change everything. Ada had leukemia and would be admitted to American Family Children’s Hospital for further diagnostic testing the following day. Two days later, Ada was diagnosed with Acute Undifferentiated Leukemia (AUL), a rare, aggressive form of leukemia that has no established treatment protocol. Due to its similarities with Acute Myeloid Leukemia, Ada was immediately put on the grueling AML treatment plan, requiring month-long stays at the hospital with up to one week at home between each cycle. After the first round of treatment, Ada still had remaining disease and was categorized as high-risk. This necessitated a bone marrow transplant as a crucial step in her cancer journey, the only way for a possible cure.

Ada courageously underwent two more rounds of traditional chemotherapy followed by a conditioning phase before receiving bone marrow from her incredibly brave 7-year-old brother, Oliver. On the day of the transplant, they celebrated the fresh start for Ada’s body with a “re-birthday”. Although Oliver couldn’t be physically present with Ada due to her compromised immune system, he was permitted to pay her a little visit through the window of her hospital room door.

Though Ada faced many physical challenges throughout her transplant recovery, she maintained the fiercest desire to play and refused to let anything keep her down. Joel recalls her hopping on her little trike to pedal around the unit, waving to all her friends in the halls, pausing briefly to throw up, and then getting back on to continue her ride. As Joel put it, “No one fights cancer like a kid.” Little Ada fought her way to the finish line and was finally discharged from the hospital in early October 2022, ready to embrace a life free from the burden of cancer.

However, early in December, Ada’s blood counts became unstable, and she became more transfusion dependent. Shortly before Christmas, it was determined that Ada had relapsed, this time with Acute Myeloid Leukemia (AML). Ada’s team tried introducing a different drug into her therapy, but they abandoned it in its second round when it was determined to be ineffective for her.

By the end of January, Ada was enrolled in a clinical trial at St. Jude Children’s Hospital. This trial aimed to target one of her mutations using a Menin inhibitor alongside aggressive chemotherapy. In her usual spunky way, Ada didn’t think of herself as sick, she was just in a new location still doing her thing. She enjoyed the art studio and music room in the St. Jude’s family center, attended preschool on-site, got a mohawk in the family center’s salon, and continued filling her days with all her little adventures. Tami recalls a day when Ada’s eyes were in such pain from the Cytarabine that she couldn’t open them, yet Ada wouldn’t let that keep her down- she just chased her mom around with her eyes closed. Despite Ada’s fighter spirit, the experimental drug did not yield the desired result, and her peripheral blasts continued to steadily increase.

As the situation grew increasingly dire, every conceivable treatment avenue was explored for Ada. Joel and Tami, in their relentless pursuit, consulted with numerous doctors across the country. Ada underwent multiple other drug therapies at AFCH but none of them were successful in fighting off her extremely resistant cancer.

Finally, a biopsy result came back revealing an exceptionally high percentage of leukemia, disqualifying Ada from most trials, and the family was gently advised to consider transitioning to hospice care. However, Ada’s parents, unwavering in their determination to save their daughter, continued to explore every possible option. It has been said that no one fights cancer like a kid, but it should also be noted that no one fights like a parent set on saving their child.

Joel and Tami consulted with doctors in St. Louis and opted to enroll Ada in a trial involving the harvesting of natural killer cells from Oliver, followed by their infusion into her. Her big brother was so proud to, once again, help his little sister and was incredibly eager to contribute to research aimed at helping kids like Ada. Ada was given a high dose of chemo to knock down the cancer, and fourteen days later, she received her brother’s NK cells. The day after the infusion, her blasts were reduced by 50%, but the side effects during this infusion were terrible. She endured uncontrollable shivering with fever, labored breathing, and a great deal of pain. Despite the infusion’s initial success, Ada’s burden of cancer reached a plateau after two months inpatient, and she was sent to AFCH with a chemotherapy drug to slow the cancer down a bit and lots of powerful pain medications.

Tami and Joel once again sought alternatives for their daughter. While in St Louis, they had sent a blood sample to a startup lab for testing which identified a promising drug combination. When Ada’s team administered the drug combination, the cancer temporarily dipped, but it soon surged exponentially, leading to the discontinuation of the treatment.

Finally, they returned home for the first time in months. During this time, Ada’s pain began to intensify, and Joel spent most nights lying on the floor next to her bed, holding her hand to comfort her through the pain. In hopes of reducing the pain Ada was in they decided to move her inpatient to try another experimental drug targeting her cancer, but it came with its own complications. Given the increasingly intense pain she was experiencing and lack of efficacy against the cancer, the doctors didn’t even want to start the next round.

Soon, it became evident that her time was drawing near. She was spending less and less time conscious due to the combination of pain medicines she was receiving- she required more morphine to manage the pain than most adults receive at the end of life. Yet, she continued to request walks in the hall and visits to the playroom, still wanting to be a kid.

In Ada’s final days, she sweetly handed out Pez candies to all her family members who came to say their goodbyes. One night, she fell asleep and remained unconscious for two days in a morphine-induced state. Even during this time, her parents remember her tossing and turning in her sleep and murmuring, “Let’s wake Ellie up,” still hoping to have a little more playtime with her sister. At one point she woke to say, “Thank you for loving me. I love you, Mommy. I love you, Daddy.” Ada was surrounded by love every day of her life, and she knew it.

Ada passed away in July of 2023 when she was just 5 years old. Her parents chose to hold a celebration of life to honor Ada complete with a bounce house, her favorite snacks, a slime station, a slideshow, rock painting, a fire truck, and police car, just the way she would like it. And Tami and Joel wrote this:

“Ada biked, ran, laughed, and played through 14 months of grueling cancer treatments. She didn’t let pain, nausea or fevers get in her way. She accepted what was thrown her way, including love and help, and found ways to make life fun and entertaining. She taught us how to live a long-standing family mantra of ours:

Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.

Ada’s parents have started a non-profit, Ada’s Spark, to fundraise for pediatric cancer organizations, including the MACC Fund. Thank you, Ada’s Spark, for your partnership as we work to find a cure.

And thank YOU for supporting research for kids like Ada. 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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