A Reflection: 5 Years Since Maddy’s Diagnosis

September 25, 2026

As we come to the end of childhood cancer month, it dawned on us how life changing this time of year always has been for our family. 

And, how we are all connected. Just like the book Hannah reads, The Invisible String, reminds us.

Five years ago, on September 25th, 2021, our daughter, Maddy, was diagnosed with leukemia. She was three months old. 

It’s one of those moments in life that you never forget. Time stands still. The world pauses for a moment, and then your life’s trajectory is completely changed. 

In the hazy, yet vivid, moments leading up to Maddy’s diagnosis, I remember a few critical story lines:

1. Being told by the urgent care doctor that we needed to get to the Emergency Room immediately. Nothing else shared – just that we would be on the top of their list when we arrived. 
2. Calling Dan, and telling him, “I don’t know what’s happening. Call my parents and get them to take Hannah. Meet me at the hospital immediately. Something is wrong with Maddy.” 
3. Sitting on a hospital bed under a colorful cutout of an Octopus because there were no beds available. 
4. Maddy’s first poke – the IV that was put in her little baby arm to test her blood.
5. Holding Dan’s hand in the ER, once we had a bed, and the doctor telling us, “Maddy has cancer. BUT it’s okay… because it’s the good kind and a 98% chance of survival.” (Little did we know that in the next few weeks we would be told her chances of surviving were under 40%). 
6. Bringing Maddy to the 10th floor of the children’s hospital – where she would spend the next 40 days.

And, then our new reality so many of us in this community know firsthand began. 

Shortly after, because I process through writing, I started a CaringBridge. And, began to document every day of Maddy’s treatment. Her journey, now forever captured in this blog, became my outlet and place of comfort in the world. 

That was five years ago. It’s wild to think that so much has changed in our lives since then. It’s the immense gratitude we feel when we think back at all of the people who donated to our GoFundMe. Who made us dinners. Who showed up when we needed it the most. 

My sister-in-laws who left their jobs to support us. My mom who lived with us. Dan’s family who spent the holidays in Philly just to say hi for a quick moment. Our first hospital friends, who helped us navigate our new normal who are now our family. Friends who left their families to support us even if only for a day.

As we look back and reflect, we realize that family is so much deeper than blood. (Which is so fitting given how many blood transfusions Maddy received from donors who saved her life so many times.) Family means showing up. It means sitting in the muck. It means saying yes when someone is going through the hardest moments of their lives. It’s checking in – even when you don’t get a response. It’s never giving up on someone. 

And, now, our family runs deeper. It’s you, reading this article. It’s our families who we get to know and support during their hardest days. It’s our friends whose children have been through cancer diagnosis. It’s our fellow bereaved parents. It’s our medical team who never gave up on Maddy. It’s our donors who believe so deeply in our work. And, it’s our amazing Madelyn James team (board members and Adriana!)!

And, what’s wild? Adriana’s daughter, Penelope, is celebrating ONE YEAR out of the NICU TODAY! We share a day out of 365 that means so much to both of us and completely changed our lives. As the invisible string says, “we are all connected.”

We are so grateful for your love, support, and kindness in this journey. And, we are excited for what’s to come next. 

Thank you for being a part of our journey! And, if you feel compelled to donate, please consider giving $25 to honor todays date.

Love,

Jackie, Dan & Hannah