ALEXANDRIA, VA – “Your baby has cancer.” Four words that turned Jackie Didio’s life on its head. Just four months earlier, in May 2021, Jackie and her husband Dan welcomed a set of twin baby girls. Madelyn and Hannah lit up their parents’ lives as their home filled with bassinets, bottles, and toys for two. The girls were bubbly and adorable.
But then something seemed wrong. Madelyn, a happy baby who was always moving, became still. The infant appeared sad, cried incessantly, would only take a bottle, and just wanted to be held. Two days before the twins’ four-month checkup, the parents noticed little black and blue dots on Madelyn’s stomach.
September 25, 2021. “I took Madelyn to Urgent Care,” Jackie Didio recounted. “Luckily, the doctor had just left Sloan Kettering Cancer Center in New York. He said, you need to take your daughter to the Emergency Room right away.” Maddy’s spleen and liver were enlarged due to a high white blood cell count.
Dan stayed home with Hannah. Jackie scooped up Maddy and drove her to Inova Children’s ER where the infant was given her first IV and ultrasound. The bloodwork came back quickly. “The doctor told us your daughter has cancer,” Jackie recalled. Four words that changed the lives of Jackie and Dan forever. Maddy was diagnosed with a rare form of infant leukemia.
Thus began the odyssey as the parents sought the best possible treatment for their tiny child. Jackie quit her job as executive director of The Child & Family Network Center, after steering the Alexandria charity through COVID19. Madelyn spent 40 days in the hospital, mom by her side. Jackie was able to bring the other twin along because she was nursing. But additional families were restricted since this was still the height of the pandemic.
Madelyn was not responding well to treatment. Jackie and Dan tried to stay upbeat and kept searching for a new path. ” We said to each other, we are going to keep going. We are not defeated,” Jackie remembers. “We are not even thinking of this as bad news. We’re here, we’re present, we’re now, twelve hours at a time. And we can have moments of joy. We focused on finding the best place that has the highest success rate.”
That led the couple to Children’s Hospital of Philadelphia. The family and dog moved to Philadelphia to be close to Madelyn as she underwent treatment for leukemia. Jackie recalled the good times in the midst of turmoil. “We walked to the hospital. We got to spend Thanksgiving with my parents in Alexandria, we celebrated Christmas and New Years at the hospital. We had many “normal” moments with our babies.”
“It’s been a very hard few years for our family, and to share our story and create this legacy gives us hope and courage!” Jackie Didio
Jackie and Dan knew they were lucky. They had excellent medical insurance coverage that took care of the lion’s share of their mounting bills. Jackie began thinking of less fortunate families hit with tragedy. How would they cope? How would they shoulder the burden?
Maddy began getting better. “Maddy was doing so well. She was so happy. Getting bigger. Chunky. Such a little chunkster. She and Hannah had so much fun together. It was starting to look good for us,” Jackie smiled.
But then things took a turn for the worse. Sadly, little Madelyn passed away on August 13, 2022. Jackie credits the support of family, friends, and a coast-to-coast network to helping her get through the ordeal.
“Our journey is very sad and tragic in a lot of ways, but we never try to look at it that way. When we got pregnant, we always said Maddy was a miracle. We were so blessed to have Maddy in our lives. The journey, the perspective she taught us. Maddy changed our lives, we are different and better people because of what we have experienced.”
Jackie elaborated, “We made every moment count. Living life like that is really hard but I feel like I’ve lived ten lives. We were both so present through everything.”
Jackie and Dan have turned their tragedy into a cause. The couple created a non-profit to increase access and equity in pediatric cancer. The Madelyn James Pediatric Cancer Foundation will hold its first fundraiser Thursday June 15 to raise money for families navigating infant cancer.
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