The Girl with the Magic Wand
Photo by Dona Laurita
JULES HAND WAVING A MAGIC WAND…
Her mother, a professional photographer, took this photo of her daughter JULES when she was small.
This child loved to sing, dance, and make people happy.
This child was diagnosed with brain cancer as a teenager.
This teenager became my teen advocate for the Hammeras Group and spoke at my events.
This young adult, Jules Laurita, succumbed to her brain cancer 18 months after diagnosis.
This picture of a child's hand and a magic wand was chosen specifically for me by Jules because "I wave my magic wand and make people well."
No, I don't, Jules. But I love that you thought I could.
I have stared at this picture for two months, often paralyzed by it. I am a professional cancer advocate, and I have helped over 5000 patients in my career; many have passed away. I knew them all. I had a love for them all. I learned from them all. Jules was the one who crossed the boundary from professionalism to personal. I loved her, and I miss her deeply. Yet I am not sorry. Jules and I were supposed to meet in this life, and she was meant to be my forever teen advocate. She led me to this next journey in life and has opened the broader window to my cancer advocacy program.
Changes must be made for cancer patients, and now I can look at this picture of Jules and her tiny hand with the magic wand and understand where we are headed and why: a national media project to educate the public and help families navigate their cancer journey. I have been working hard to find a solution for patients and families who cannot afford world-class care and who are unsure what resources are available to them. I believe this can be achieved with inter-hospital collaboration, and I am doing everything I can to make this happen.
Jules's journey is sadly the perfect example of the difficulties of navigating through our complicated healthcare system. Most of us are not aware that 50% of us will be touched by cancer in some way. Some are very rare, and each unique, so learning where to go and by whom to have it treated is a paramount decision. With rare pediatric brain cancer, Jules’s parents were faced with this same challenge. They were settled with their local hospital, which had their advice for treatment, but they wanted to consult with others to ensure the best treatment for Jules. At this point, I had been introduced to the family and quickly moved to coordinate a consult with one of the top five research facilities in the nation in neurosurgery and neuro-oncology. We also requested a third consult on the east coast and a fourth elsewhere. Of the four hospitals, the three consults were in agreement, but their hometown hospital was not completely on board. Greatly complicating matters, the local hospital was opposed to collaborating with the others. Through finesse and conversation, their hospital finally agreed to consult with the others. Scans were shared throughout, and collaboration was made possible — for the benefit of Jules.
Later in her cancer journey, Jules and her family, through their own exhaustive research, were able to find a very promising clinical trial at Duke University. Undergoing the clinical trial at Duke meant flying to North Carolina for the trial and then flying back to Denver, where their local hospital had to handle emergencies and complications from the trial. Collaboration was critical. Often when Jules was hospitalized, the doctors at her local hospital had to rely on Duke to help guide them. There are many unknowns with clinical trials; working together is paramount. Woefully, the clinical trial did not help Jules, and she passed away.
In my career as a cancer advocate, Jules’s story is similar to every story— a cancer diagnosis that requires urgent decisions that are often not possible. The "where to go and who to see for my unique cancer" is not at our fingertips, outside consults may not be affordable, and hospitals don't work outside their own networks to assist patients. We may think this type of care and collaboration exists, but it does not.
The picture of a little hand with a magic wand was chosen specifically for me. But not so fast, Jules. You are the one waving the magic wand; I am simply the one working to make YOUR wish come true: changing the siloed nature of healthcare by making collaboration among institutions for the benefit of the patient our new reality.
I am honored to carry this forward for you, my sweet Jules. I think you will be very proud.