Guest Post By Scott and Pammy Kramer
September 1st marks the beginning of Childhood Cancer Awareness Month. In honor of Childhood Cancer Awareness Month, one special family from Chicago is undertaking a social media campaign to help raise awareness of the love, light, and inspiration that accompanies even the darkest of pediatric cancer journeys. For every day in September, the Kramer Family (whose beloved daughter Maddie bravely battled a rare form of cancer at just two-and-a-half years old) will be sharing a new inspirational lesson that Maddie’s battle taught them. Those lessons are memorialized in their recently self-published book, Maddie’s Miracles: A Book of Life. For the entire month of September, 100% of the net proceeds of sale for the book will be donated to cancer charities. The book is available in paperback and Kindle form at Amazon.com and may be purchased by clicking the following link: https://www.amazon.com/dp/1980914176/.
To learn more about Maddie’s journey, and her parents’ ongoing efforts to raise awareness for pediatric cancer, please visit their website at http://maddiesmiracles.wordpress.com.
The first of Maddie’s many life lessons: that miracles are possible. Learn more about her first miracle in this excerpt from Maddie’s Miracles: A Book of Life.
Rise Up - 4/27/17
On April 20, 2017, the night we brought Maddie to the emergency room, we had thought she just had a nasty virus. She had been experiencing pain in her neck for the previous seven days, which we believed stemmed from swollen lymph nodes in the area. This diagnosis was confirmed by three previous doctor visits. The only reason we even went to the emergency room that night was that Maddie started to get rashes on her hands. Our pediatrician thought, out of an abundance of caution, we should have her examined in order to rule out “Kawasaki Disease,” an unlikely condition associated with hand rashes and neck pain. As we walked through the ER doors, with the sun setting in the background, we had no idea of the darkness that awaited inside.
Upon arrival, Maddie and I sat in the waiting room together. We watched Lion Guard, ate animal crackers, and drank apple juice. A regular ole Daddy/Maddie date night. My biggest worry was the emergency room copay.
The nurse then called us into triage. She asked me to place Maddie on the scale. I excitedly started to put Maddie down and playfully chit chat with her about how much we thought she would weigh.
Then it happened.
As I set Maddie on the scale, both of her little legs went limp. She couldn’t bear any weight whatsoever. I could feel my heart stop as I watched her crumble. The same sweet girl whose main weakness in life was her inability to sit still for more than five seconds was dependent on me to carry her back to the waiting room.
My voice shaking in fear, I asked the nurse my quivering question. “That’s probably just atrophy, right? She’s been laying around a lot the last few days.” I saw the intense look of concern on her face as she tried to calmly tell me that my theory was possible.
Over the course of the evening, Maddie started to progressively lose movement on her left side. Her left arm and left leg were largely immobile. Despite multiple attempts in front of doctors and nurses, she didn’t show any ability to walk the rest of the evening. Numerous painful physical exams and countless hours later, the MRI results came back sometime past midnight on April 21st.
As the Neurology Fellow knelt before Pammy and me in the waiting room, she wrapped her hands around her neck. Before she even started speaking, as she struggled to mouth a single sound, we already knew. We didn’t hear the exact explanation that would eventually follow. But her body language said more than words could convey. My atrophy theory was out the window.
Maddie had her emergency surgery that morning. The wait was agonizing. I’ll spare you the devastating detail for another day. But needless to say, the fear and pain of sitting in a waiting room – while your precious baby girl is undergoing surgery to save her life – without any guarantees of who is going to emerge (let alone if she will emerge) is a hell that no human should ever experience.
But by some miracle, our little Maddie emerged. She appeared every bit herself mentally and emotionally. Only her physical abilities were left hanging in the immediate balance, as the left side of her body remained immobile, and we had not seen her stand on her own, let alone walk, for more than a week.
And so six days after hospital admission (as I slowly regain my ability to breathe, speak, or type anything meaningful beyond tears), we’re now at the Shirley Ryan AbilityLab rehabilitation center in Chicago. Our first order of business – get little Maddie back on her feet and hopefully regain strength and mobility before the cancer treatment begins.
We had our first physical therapy session this morning. With her world recently rocked, Maddie spent the entire session refusing to play. She wasn’t going to perform for anyone. Let alone Mike from AbilityLab. Pammy and I talked about whether this place could make an impact on her if she wasn’t going to play by the rules.
But then, two hours later, Maddie unveiled another miracle. With the support of nothing but Grandma’s iPad, Maddie stood on her own two feet. Our second miracle in six days. Survival. Then Standing. One miracle at a time.
Maddie likely has weeks of physical therapy ahead of her, but seeing this type of miraculous progress was an incredible start. You can only keep Maddie down for so long before she rises back up. Watch out, Mike from AbilityLab. Maddie’s coming for you!
To follow Maddie's story, please visit http://maddiesmiracles.wordpress.com.