You can read Scott’s story in a blog post below, or listen to it here.
*Trigger Warning: Child Loss
Scott is the father of Maddie, who had a rare cancerous tumor and unfortunately passed away in January 2018 when she was just three and a half years old. Despite this, Scott speaks of how Maddie is living on through all of the miracles. Scott and his wife, Pammy, live in Chicago with their three-year-old daughter, Lily. Scott describes the two girls as being similar in so many ways, but at the same time Lily is still so clearly a second sibling. Maddie was initially diagnosed in April of 2017 and her sister Lily was just two months old. She underwent emergency surgery that same month for a tumor covering her spinal cord. Scott and Pammy Kramer started a foundation in her name, Dancing While Cancering.
Scott wrote “Maddie’s Miracles,” from an accumulation of blog posts he wrote during the time of her battle with cancer. Scott describes the week leading up to her diagnosis and how this was nowhere on their radar. She was “healthy and happy” and “even colds were rare for her.” But this week she was complaining of pain on her neck which escalated throughout the week. Every doctor just claimed she had a virus that was causing her lymph nodes to swell which led to pain. As they waited it out, Maddie started to show some rashes on her hands and this indicated to Scott and Pammy that what was going on was not normal. Finally, their primary doctor determines there is a rare condition associated with hand rashes and neck pain – Kawasaki disease and suggests going to the ER one more time. Scott and Maddie head to the ER still not expecting much and walk in just trying to have fun. She had a juice box in one hand and animal crackers in the other as they sat in the waiting room watching Lion Guard. They were expecting to wait a long time and then leave. But ultimately, her legs buckled right as he was putting her on the scale. He said, “She’s been laying around a lot. It’s possible her legs have just atrophied. That would be a normal reaction to not moving around for the week.” Agreeing, the nurse said yes but there was also a look on her face showing a different level. As the night went on, Maddie grew paralyzed down the entire left side of her body. A doctor suggested an MRI to figure out if it was more than an abscess. Come to find out, there was growth covering four levels of Maddie’s spinal cord. Pammy had joined him at the hospital at this point and said, “Are we really here right now?” In a matter of what felt like minutes, they were being told she would need surgery and they were not even sure if she would survive.
Episode 33 | Scott’s Story – A daughter with a rare cancerous tumor
Within five minutes of being intubated for surgery, someone from the child life team greets Scott and his wife. He describes the topic at that moment as a “warm blanket” which was how to talk to Maddie about what was going on. It gave them one thing they could control. Parents tend to jump to saying everything will be okay and the doctors will make you feel better. Instead, Scott demonstrates his understanding of building trust with your child and making sure your words match their experiences. They spent six hours during her surgery just praying to see her again. When you have a child you are filled with all of the hopes and dreams for them; there was no doubt she would change the world. Maddie emerged from her surgery and they heard their squeaky voice again. All the pain and fear melted away.
Maddie had a big personality; at two-years-old, she had full-on passions and was ready to play with figurines. She was like a five to ten-year-old in a two-year-old’s body. Scott describes this as a blessing in the face of trauma. As a parent, you like to think you are the developed protector, but Scott notes this could not be further from the truth. In moments of trauma, we think about what has changed or what might be or what if this. Children, especially toddlers, just feel good and play and when she didn’t – she didn’t. Child life gave them the tools to communicate with her and help her understand what was going on. She carried them through their treatment process – not the other way around. To explain what was happening, Scott and Pammy took advice and did their own research to see what resonates with Maddie. The key was to break everything down and explain it in a way she could understand. Ultimately, they always tried to make it positive. She was diagnosed with a rare form of cancer that would put her on 52-week chemotherapy protocol. This meant they were not describing just one thing, but a world she would not escape from. They always tried to connect things for her. For instance, they said “Remember how your neck was hurting? It was because of a ball in your neck, a tumor. But the super doctors took it out and that is why it feels better.” Continuously, they would remind her why her neck hurts or what she was at the hospital for.
She put everything together. Framework of breaking everything down and having a little fun permeated throughout her entire journey. This helped her move through something that would otherwise be “traumatic and soul-crushing” to grow emotionally and physically. She was flexible for the hospital to be another play space in her life. Scott says, “Despite going through hell, we didn’t feel it because of her.” They created a safe bubble around her while still telling the truth. Bliss of hope was present because her disease was not terminal. Keeping her secure and happy was their medicine, their hope.
Protection often means shielding them when it comes to parenting; we don’t want them to know evil or pain exists. Scott and his wife were so open with Maddie which was atypical. Family was her protection and buffer while still knowing what was going on. The first step on this journey was a gentle nudge from child life to not stop at “it will all be okay.” As adults even, when we experience something hard people don’t say it’s gonna be okay. Instead we have a conversation to give them a space to accept the possibilities and know the truth. Scott says there is “something so warming about truth and support coexisting.” Scott and Pammy still apply this to their youngest, Lily today. There are no sneak attacks anymore, if something is uncomfortable we just do it. Lily ,now, is the best patient because of her parents’ prep and conversations beforehand.
Watching Maddie with tubes surgically implanted that she could name ‘princesses’ while knowing they deliver chemo that makes a tumor not come back. Her parents wanted to make the hospital a positive place for her. The original name of the hospital is Ann and Robert H. Lurie Children’s Hospital of Chicago instead of they called it ‘Lurie’s Place.’ One of their biggest blessings was the playroom there – it was a place where Maddie could still be a kid. It became the beginning seeds of the changes Pammy and Scott hoped to make once they were no longer patients. Scott describes their 8 ½ months with Maddie as love, miracles, and inspiration. They knew this would not be the end and her life would be remembered as an inspiration, this is where their idea of Dancing while Cancering came to be.
Dancing while Cancering was founded in October of 2018 with a mission to bring joy inside the hospital for any child facing cancer. They created ‘Smile Packs’ which were like green backpacks with all sorts of things to turn the hospital room into a playroom. It includes room decorations, disco balls, and musical instruments to represent Maddie’s room in the hospital. Slowly but surely, as they spent more time at the hospital, they decked out her room. Transformation and recreation of the room gave a new mindset to kids in the hospital, which is a gift. On the outside of each pack, their special note from parent to parent said “As circumstances permit, to take advantage of those moments to smile.” They did not have much of a vision except to give back to the hospital that gave them so much. Now they are sending these packs to 14 hospitals. Hearing from the parents who receive these packs is the most heartfelt and rewarding part of this foundation. They always say, they hope and pray that one day their work is not needed anymore but until that day comes they will do their best to provide support just as much as medicine does. He puts it beautifully, “if we don’t treat our children while that disease is being treated, we’re not fully caring for that beautiful human being.”
Episode 71 | How To Tell Your Kids That Mom Has Cancer
Touching on “Maddie’s Miracles” again, the book published by Scott and Pammy Kramer. This book factually tracks Maddie and her family’s journey from diagnosis on. It is not a book about cancer, but about how we handle trauma and adversity. They even included Maddie’s personalized playlist they would dance to with her. His second book, “The Miracles that Follow,” is a compilation of journal entries from the date of her passing through the launch of Dancing while Cancering. It is a memoir of how to move forward after such unimaginably deep losses. For their family, this came in the form of continuing to find meaning while also creating a legacy for Maddie. Now when they say her name they can laugh and smile and know they are making a difference in her memory. All of the royalties of both books are donating to cancer charities. They also operate a blog called “Maddie’s Miracles” (dancingwhilecancering.org) which was originally created to keep friends and family updated. There are recognitions of all the charities they have donated to through the books, pictures of Maddie, along with every entry from the first day of diagnosis. All of it is an extension of her – dancing away on the hospital floor. On their instagram @dancingwhilecsncering, every week, they share a new patient and how they #battlewithjoy. This is a way to honor them, cheer them on and raise awareness for new families. Scott ends the episode to say, “as adult as this disease gets, kids are still kids. And we are trying to honor that, inspire it, and it is a gift from child life and Maddie.”
Advice for Parents
Our minds, as parents, might be our biggest strength, but they are also our biggest weakness. We tend to get worked up about the future and what if’s. Children, more often than not teach it’s okay to play when we feel good.
Treat your child in the same way we treat disease. The medicines and strategies are important, they keep us alive. But it is just as important to care for human beings who will grow old.
Dance when you can. Maddie didn’t let an IV tube get in the way of some dance moves. Smile when you need to, it won’t make the tough stuff go away but it will make you feel a little better.
