Today would have been our 23rd Anniversary and yesterday was 9 months since she's been gone. Two dates that are significant to me. Since Julie died, I miss her everyday, but some days hurt more than others. I try to channel that energy into something productive and meaningful, so I thought it would be a good time to let each of you know how I would like to continue Julie's legacy and offer you a chance to be involved.
My Experience
Our battle with Glioblastoma lasted 15 months. As you can imagine it was a long 15 months full of all kinds of emotion. One thing you may not be able to imagine is the lack of cohesive information, direction and resources available to patients, care givers and their families. Too many nights during that 15 months I would lay beside Julie until she fell asleep then head downstairs to research. I would spend hours on the computer clicking around trying to understand everything there was to know about the disease, options for fighting the disease and who we should see to help in that fight. But also, there was the mental and emotional side. How do I support my wife? My kids? Myself?
I spent hours finding doctors and calling medical centers. I wasn't afraid to call anyone. As a result we had the top doctors across the country looking at Julie's case and providing us feedback. We had regular visits with KU Med, MD Anderson, Duke Medical, UCSF Medical Center and Mayo Clinic. Additionally we had consults with University of Michigan Medical Center, NYU Medical Center and Johns Hopkins.
Though I felt like I was doing everything I could and many of you encouraged me by telling me I was, I still had questions. I needed more information and a way to tie all the elements of medical, emotional, and mental all together. As I continued to search for answers and resources, I often thought to myself, "I am a person who is driven, not afraid to call anyone, and Julie and I have been blessed enough to be able to go anywhere we need for treatment. What happens to the people who don't have that same mindset and can't go anywhere? How do they navigate this?" I can only imagine how desperate they feel at times or maybe even worse, they just stop trying.
My Desire To Continue
In the months since Julie died, I have been looking for a way to continue her legacy. Julie loved to help people. When it came to her friends, she wanted to be there in the exact moment they needed her. Just one example of this is how she loved to give gifts, especially when people were going through a difficult time. Whether it was a "pick me up" vase of flowers, that person's favorite candy or a simple card of encouragement, she wanted to be there. I remember countless times when we would be heading to dinner or running errands and she would say "Let's just stop by this person's house so I can drop a gift on the doorstep". In the early years of our marriage I didn't understand and was often annoyed with the extra stop. As time went on, I began to see first hand the beauty of these simple gestures and the impact she had on so many people.
Though I watched her do it for so many years, I'm still not very good at it. I am constantly thinking about how I might continue that legacy to be there for people when they need it and with what they need. So my question became, "How do I use my skills and abilities to continue Julie's legacy of helping people?"
A Divine Appointment
At some point during our fight with the disease, I was introduced to the founder of an organization called Head For The Cure (HFTC). Matt Anthony started HFTC during his brother's battle with glioblastoma and subsequent passing over 20 years ago. As it happens, he and I have a mutual friend who was gracious enough to connect us. So as this question of continuing Julie's legacy floated around my head, I reached out to Matt. We arranged to meet for coffee on November 4th, less than a month after Julie died. During that meeting, I was able to tell him my story and the idea I have of building a technology platform that marries the available resources for medical, mental, emotional and family direction throughout an individual's and family's journey navigating the terrible circumstances in which they find themselves. I believe there is a way to harvest the essential information and guidance and provide it to patients and caregivers when they need it and, maybe more importantly, when they want it.
Matt was not only gracious in his response to my idea, but was genuinely excited about what we might be able to put together. In fact, he said providing more help and resources to patients and caregivers, beyond funding research, was something he and others a part of HFTC had been discussing. He was excited to keep our conversation moving. Since that meeting we have continued to meet to put further form to the idea. Currently, there is a team of people working on a plan and taking steps to create this platform.
Next Steps
As the team continues to bring form to this idea of honoring Julie, I would like to begin getting people involved. I would like to use the annual HFTC 5k on August 28th as an opportunity to kick off our effort. Here is the link to Team JPH where you can sign up to be on the team and donate. My hope is to use this time to gather in support of HFTC and all the research needed to actually cure this disease, but also make sure we help people while we are waiting for that cure.
Many more details to come, but I hope you will mark your calendars for August 28th, register to be a part of Team JPH and begin the work of continuing Julie's legacy of helping people.
*For those interested in the pictures... the top one is in our limousine leaving Colonial Presbyterian after our ceremony. The middle is the weekend of our 9th anniversary in Chicago when we attended the wedding of our friends, Scott and Natalie Merchant. The last one was also on our wedding day in the entry way at Hallbrook.
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