A Weekend of Hope, Promise, Pride and the Power of Strength in Numbers
It was an emotionally draining weekend for me, but one full of promise, hope and pride and the continued strength in a support network.
Pride in what Avery’s impact continues to be in people’s lives.
Promise and hope for what her donated tumor is doing for researchers and doctors who are doing everything they can to find a cure for DIPG.
On Thursday, while in the Bay Area for work, I was able to stop in at Stanford during a break in the day to meet with Dr. Michelle Monje-Deisseroth, the incredible professor who, along with those that work in her lab, is doing major work in search of a cure for DIPG.
Dr. Monje, (MD, PhD) is an Assistant Professor, Neurology & Neurological Sciences at Stanford and a board member of numerous pediatric brain tumor consortiums.
Her drive is to find this cure and she’s one of the leading researchers worldwide in this fight.
I was able to see Avery’s cells in the lab.
It was incredibly surreal for me, as you can imagine.
I was hesitant until I quickly realized that those cells are giving them serious data and information in their studies.
Dr. Monje reiterated how her lab has been able to share Avery’s cells with over 20 labs around the world to contribute to their research.
On Friday night, I went to the San Jose Valley Christian-Mountain View St. Francis game.
At that game, I met the family of Jennifer Kranz, who like Avery, bravely battled DIPG.
Jennifer’s uncles are coaches at both of the schools, and that game in 2013 honored Jennifer shortly after she was diagnosed.
This year, the weekend I was in the Bay just so happened to be the same weekend of that game.
I was able to meet her uncle Eric, who is a coach and administrator at Valley Christian.
And I was able to once again talk with her uncle Greg, who is the head coach at St. Francis and who I met a year ago and realized his connection to Jennifer.
Before the game, I stood on the sidelines with Jennifer’s mother, Libby.
Before kickoff, the two teams held a moment of silence for Jennifer and for Avery.
It caught me off guard but gave me great pride in knowing that people are still honoring and remembering our little girl.
Players tweeted before the game they were playing for Jennifer and Avery and one, overcome with emotion after the game, wanted to tell us that he dedicated that game to the two of them.
Meeting another family who has been through this horror, but is making the most of their daughter’s legacy (they have established Unravel Pediatric Cancer to honor Jennifer), gives us that hope and promise for the future, for those fighting pediatric cancer.
Lastly, on the flight home, like I often do, I wore an AveryStrong shirt.
The fella sitting next to me asked me what it stood for.
I gladly took the opportunity to talk about our hero and inspiration.
He asked, I told.
And he said he appreciated hearing the whole story, many of the deep, ugly details about this disease.
That’s one of the major reasons we do what we do- not just to raise funding for research for a cure, not just for Avery’s tumor to contribute to the research, but to also share Avery’s story, share of her fight and brAvery, spread awareness of this disease and let people know, this is the horror DIPG warriors go through, but they fight, they fought and we have to do the same.
As tough as the meeting with Dr. Monje was, especially seeing the cells of our late daughter, knowing she’s making an impact brings me comfort.
And meeting another family who had to go through the exact same thing, as horrible as it is to be a part of the club no one wants to be a part of, it brings encouragement to know others are fighting to honor their children.
And as tough as it may have been for the unknowing passenger just what he asked for, I will never hesitate to share about Avery.
And I will continue to honor her legacy and her fight and share her story.