runDisney Celebrated Charity Spotlight | Turning Pain into Purpose with: Running Towards a Brighter Future for Kids with Cancer

The Leukemia & Lemphoma Society's Team in Training participant, Amanda, shares her story below.

Five years ago, you would have never caught me running. I was the type of person who subscribed to the latest work out trend whenever my busy schedule would allow. Today, running is my therapy. Running and The Leukemia & Lymphoma Society’s (LLS) Team In Training program gave me purpose and a path forward when I didn’t know if I could take one step further in a life I didn’t ask for, in a life I didn’t want, in a life following the death of my daughter. I can’t outrun my grief, carrying it has made me stronger, but I can run toward a brighter future for kids with cancer.

Becoming a mother was very high on my list of priorities for the future. I operated with the mindset that if I imagined what my life story would be, it would ensure that my dreams of family and children would become my reality. I never imagined that the life I dreamt of, the story I had written for myself, would be tragically rewritten.

As she grew, we realized she had a fear of missing out that was unparalleled and a directive side that let you know she was in control. She had brilliant blue eyes and an infectious smile that caused people to gravitate to her. For 14 months, I cherished every moment and celebrated every well-earned milestone, unaware of the world we were about to enter, the terrifying world of childhood cancer.

At 14 months old my daughter should have been nothing but future.

Instead, in October 2017, Edie had her first fever of 102.7. After four days, that included three visits to the ER and two visits to her pediatrician, Edie had stopped walking, talking and eating and her belly began to swell.

When we returned to the ER for the third time, an hour and a half of bloodwork and imaging irrevocably changed our lives as we were told Edie had a dangerously low platelet count of 17 (low end of normal was 150), a brain bleed because of the low platelets and a fall she and incurred toddling across our hardwood floors the day her fevers began, a 5cm mass near her kidneys, an enlarged liver and spleen with abnormal looking blasts, and fluid filling every available cavity in her abdomen which was making its way to her lungs. In four days, Edie had transformed from a precocious toddler, full of life, to a shadow of herself. Her tiny body was already ravaged by the disease. Her bone marrow was so impacted by disease that it could not be extracted for diagnostic testing. Edie was deteriorating so rapidly the team was concerned she was dying. A diagnosis was a luxury we could not wait for. After much consultation, Edie was given chemotherapy without a diagnosis to try slow the progression of the disease and save her life in those early days.

Edie was ultimately diagnosed with a form of pediatric acute myeloid leukemia (AML), one of the deadliest families of childhood cancer. Devastated, I began to assure myself that this was leukemia and to my limited knowledge, the treatment for leukemia had come so far, it was now survivable. I didn’t know THIS leukemia was different. I didn’t know that pediatric AML had a five-year survival rate just over 68%. I didn’t know that Edie’s cancer had a unique biology and subtype that significantly reduced her chance of survival to 20%. As a parent, how do you reconcile that your child has cancer and the probability that your 14-month-old is going to die?

What made it worse, was that despite the decades of advancement for other types of cancer, there was only one treatment for pediatric AML. Despite AML being a heterogeneous disease (many types of the disease under a single umbrella), there was only one treatment. A one-size-fits-all, high -dose chemotherapy cocktail that was decades old and distributed at the highest tolerable dose a little body can withstand. Edie’s treatment called for 5-6 months of living in-patient in isolation in the hospital, so we moved out of our NYC apartment to be beside her.

We celebrated every holiday from Halloween through Easter in our little room alone. I left my job to become her full-time caretaker, historian, and medical record keeper. During that time she received four rounds of high dose chemotherapy which left her susceptible to life-threatening infections that put her in and out of the pediatric intensive care unit, she suffered chemo-induced kidney trauma resulting in sky-rocketing blood pressures which required her to take five medications to reduce her risk of neurological damage; she had painful mouth and throat sores; rashes; and she lost, regained and lost again her ability to walk and eat. And despite the chemo being able to do so much, the one thing it was supposed the do, the one thing it should have done, was kill the cancer.

Instead, Edie’s cancer remained resistant, she never reached remission, she never reached bone marrow transplant. And on Easter Sunday, April 1, 2018, we were brought to our knees as our ears rang with the words, “There is nothing more we can do.” The cancer had spread to Edie’s liver, her liver had failed. We moved to comfort care and five days later on April 6th I knew my daughter would never see another sun rise. I curled in bed beside her, cuddling her between her Daddy and I. We were determined to usher her out of this world the same way she entered it, surrounded by our love. During that time, I whispered my promises in her ear. My last promise was that I would do everything in my power to give kids the chance at life, a chance she deserved. Being directive as she was, Edie committed me to that promise with three more breaths before she left on the wings of her last exhale.

Being 9 months pregnant, and due April 11th, I went into labor. Like ships passing in the night, Edie sent me her sister to fill my arms and hold my heart when I needed her most. I gave birth to Edie’s little sister Eleanor 11 hours later one floor down in the same hospital I had just said goodbye to Edie in.

Edie was one year, 8 months and 7 days old when she died. And so, I must mourn for the lost kisses, lost cuddles, the lost lifetime of memories.

My role as Edie’s historian and mother have continued. I’ve had to redefine what these roles look like but my commitment to my daughter has withstood helping write a new chapter as a Team In Training marathoner and two-time Dopey Challenge finisher, and through my work as a national ambassador and volunteer for LLS’s Dare to Dream Project. While many children survive leukemia, the treatments are harsh and outdated. Through LLS’s recently launched Dare to Dream Project, LLS is taking on children’s cancer from every direction, disrupting the status quo with a bold vision for young patients – to not only survive their cancer, but thrive in their lives after treatment. The project aims to power innovative research, new, safer treatments, support services, and advocacy.

Amidst my grief, this project fills me with so much hope.

At the core, we dream that more kids, regardless of geographic location or income will have access to better, more effective and safer treatments. But we also dare to dream that parents will have more treatment choices; we dream that families will be able to stay closer to home and together; we dream that there will be more collaboration and data will be warehoused and shared to expedite the advancement of care; we dream that new treatments are being researched and developed and that more is being done to learn about the biology of these cancers; we dream that more legislation is being advocated for in support of kids; and we dream families are being supported financially, clinically and emotionally throughout the treatment trajectory even beyond survivorship.

We dream kids who do survive do not have to do so with chronic, life-limiting conditions or secondary cancers because of the treatments they received, and in our dream, parents will not have to hope and pray that their child falls on the right side of the statistic. This is what we dare to dream. The scope and scale are unprecedented and LLS is the ONLY organization with the convening power to overhaul a broken paradigm that does not favor the unique needs of kids in order to bring this dream to life.

My hope is that others will learn of this project and be inspired to join us in seeing this life-saving initiative to the finish line, promising a brighter future for kids and preventing another parent from having to feel the heartbreak I feel.