Picking Up The Pieces..
Friends of Zachary,
I was recently invited and attended the 1st Annual Children’s Brain Tumor Project symposium held in NYC, March 19th. The Children’s Brain Tumor Project was founded in 2011 at the Weill Cornell Pediatric Brain and Spine Center. The project owes its inspiration and launch to Elizabeth Minter, whose battle with gliomatosis cerebri — a rare and inoperable brain tumor — inspired her surgeon, Dr. Jeffrey Greenfield, to undertake this groundbreaking research initiative. In starting the Children’s Brain Tumor Project, Dr. Greenfield joined forces with Dr. Mark Souweidane (Zachary’s Surgeon), who had already spent a decade researching and testing alternative therapeutic delivery systems for other inoperable brain cancers, such as DIPG.
The Children’s Brain Tumor Project has a single goal: to bring hope to the hundreds of patients and families each year who confront these heartbreaking diagnoses.
The attendance of the conference ranged from families who have lost their children, are in the process of losing their children or families with newly diagnosed pediatric diseases. It was very clear, the common thread among all the courageous families was the enormous pain, frustration and eagerness to make a difference.
The group was in awe that I had the strength to attend the conference just a week after Zachary’s passing. Someone said…”why are you here”, my response was “Why not”.
Throughout the day there were discussions of surgical techniques, research, case studies, data that shows how little money is raised and used to support pediatric research and treatment. I must be honest and say, as predicted, the underlining purpose of this event was to raise money for the projects cause. I am certainly not endorsing or denying anyone the opportunity to support this project as many will surface over time. I personally benefited from gaining further knowledge about the challenges the medical community has, when dealing with these life threatening diseases and help shape the way I want to make a difference in this flight for a cure.
Throughout the day, Dr. Mark Souweidane kept referencing me and our families flight to save Zachary’s life. The many doctors, hospitals & relationships I have established and been associated with over the year. There was much attention paid to the way Deena and I managed Zachary’s treatment.
Many families during the break, came up to me to share their stories and seek advice and counsel on how to cope with a recent loss or help organize themselves since their newly diagnosis. I was proud this day to have shared the knowledge I have amassed over the months and I witnessed the ease and slight comfort I was able to provide some families who just did not know what to do or how to organize their lives. Over the weeks I received the following e-mail that stated…
“Dear David…Thanks again for the Dr. reference. It was a pleasure meeting you, as I was struggling with the right words to say about Zachary, you lifted me up about my boy Christopher. I pray for your families healing and peace…Maria”
“Hi David, I wanted to thank you again for your help and for recommending Dr Allen and Dr Gardner. My son starts his treatment with them at NYU on Thursday for his atypical Medulloblastoma. I also wanted to let you know that I read your recent update on GiveForward and you, Zachary and your entire family are in our prayers. Your whole family has been an inspiration to us and we wish you all the luck and comfort that you deserve as you continue this fight. Thank you, Casey”
It was actually a comfort to hear from you today. I had gotten so used to looking for your updates and just figured they would come to an end now. Your continued writing makes it feel like Zach is still here. I hope this doesn’t sound insensitive in any way- I just wanted to let you know that again, you are comforting us-which is really just amazing.
Love you to all, Danielle
MY IMMEDIATE PURPOSE
I was asked by the organization to be a parent-to-parent consultant/advocate to help families and patients with newly diagnosed diseases. I proudly accepted my role and will look to this as a test to determine if this is something I need to pursue further down the road. I know I left the conference more insightful than I did before. I realized this is a continued epidemic as the rise of Pediatric Brain Tumors are increasing every year and I was proud to say I think I helped a few families along the way.
We are now getting inundated with calls and e-mails from many wonderful causes and tailored awards that honor Zachary’s memory. We can’t thank you enough, for your interest in honoring Zachary and the wonderful students that deserve to have their name associated with Zachary life. Over the next few weeks, my family and I will determine where we want to focus our energy and what will be the appropriate way to honor Zachary’s memory.
As we continue to make sense of this tragic loss, we will be more visible than ever as Zachary’s life will not be in vain. I have several goals…
* Reconnect with my amazing family and make sure we are mentally and physically prepared for what lies ahead.
* Honor Zachary’s life and memory in the most symbolic and meaningful way possible.
* Take what I’ve learned from this experience and try to save just 1 life.
* Embrace what I’ve learned to better myself as an father, husband and employee to the many people that have supported me and my family over the 9 plus month.
* As a friend pointed out…rejoice in the 11 wonderful years you had with Zachary vs going to a dark place that you can never return. Yesterday is gone, live for today and let tomorrow be your inspiration and future.
Our Sincerest Appreciation,
Deena, David, Matthew, (Zachary) & Molly
“It Takes A Village”