I had so many people ask me if I went to New York on vacation. I wish it were vacation. I want to call it a mission, a very important mission. So I would like to take this opportunity to explain exactly how I got to this point.
Over a year ago when Trey was in the stage of being diagnosed, Trey’s oncologist at St. Jude contacted Dr. Dave Tuveson to ask his opinion about a child of 15 being diagnosed with pancreatic cancer. He said it was not possible. (Dr. Tuveson tells me now that he was contacted then.) Dr. Tuveson is a world renowned physician, scientist, speaker, you name it! Trey’s doctor had attended a seminar type study under Dr. Tuveson and he had served as her “preceptor”. So that is the connection between St. Jude (Dr. Federico) and Dr. Tuveson.
I did not know, but Dr. Tuveson kept up with Trey’s short progression and knew of his passing. After Trey’s passing, I was a guest of The Orchard and it was my first time to speak. In the congregation was a man by the name of Bob Bean. Bob came to me and said I think I know of a man you need to talk with. It was Dr. Dave Tuveson.
In October of 2012, I called Dr. Tuveson and he asked that I email him a brief history of Trey’s story. We knew at that time that Collin had been diagnosed with the P16 gene, but we were reluctant to share this information to protect Collin. I think Dave was still a little resistant that Trey had pancreatic cancer (I’m giggling). He forwarded our information to someone that he thought could help us at the National Cancer Institute and it was a dead end, but Dr. Tuveson never knew this fact.
About a week ago, Dr. Tuveson sent me an email that began:
Mrs. Erwin: I hope you and your family are doing well….I would like your permission to borrow your story as a motivation point….
The email immediately got my interest. I contacted him to find out exactly what he would be using and why. He told me that the Cold Springs Harbor Institute has an annual fundraiser and as a part of that fundraiser they chose what he spoke about to use in their mission statement. He told me he did not remember a lot of what he said except that when they asked him what made him so passionate about pancreatic cancer research, Trey’s story came to mind. He told me on the phone that he remembers being so angry that a 15 year old would die of pancreatic cancer. I had to agree with him.
We gave them permission to use the video, of course, knowing that each person that viewed the video would also view Trey’s faith story. My sister, Donna, and I ended up in staying at Cold Springs which sprawls over 120 beautiful acres on Long Island. We arrived on Sunday night late at Cold Springs and they housed us in an apartment on the property. There are many apartments on the property for visiting scientists, etc. Early Monday morning, Dr. Tuveson met us for a tour of his lab. There are many things I can say about the tour. The one thing that stuck out the most is that all of his staff are so passionate about their work. He tells them their job is to put HIM out of a job. They are working very hard! But MY mission was for each scientist there to look at me and know WHY they are working. I did not hesitate to pull out my pictures of Trey nor did I hesitate to talk about Collin. To say they were stunned is an understatement. At one point, I just spread Trey and Collin’s pictures across the table from October of 2011 until senior recognition at the football game a couple of weeks ago. Pictures tell many stories.
On the way to the fundraiser in Manhattan, I gave Dr. Tuveson a St. Jude pin. He said that he had never been to Memphis. I asked that he put it on his desk somewhere so that he will not forget Trey and why he was working. He laughed and said he would never forget Trey.
Sure, Donna and I met celebrities; talk over an hour with Dr. Jim Watson who discovered the structure of DNA and won a Nobel Prize, but what I remember the most was the beginning of the dinner and the video. It’s actually THEIR mission statement. When it got to the part where Dave began talking, I didn’t hear a word he said. All I could do was look at Trey and cry. Luckily, I was turned to look at a screen, the room was dark, but Dave saw the tears rolling and he asked if I was okay. I just smiled and said yes. The emotions of the day had caught up with me. And there was Trey, my buddy, not saying a word, but smiling for a video that he never thought would be shown to people that would promote awareness of pancreatic cancer. He was smiling because he just because he always did.
I was able to talk to Deborah Norville after she had me on the stage. We talked about being moms and how well we know our children. She said, if people will just listen to moms! I laughed and told her that I am usually right when something is wrong with the dog! It made me think a little more. God did instill something in mothers. I’m not sure what it is. Donna told me a week ago, “Just think, two years ago you were just a regular mom with two teens.” God knew what the path would be for me, for Trey, for our family. As a mom, it’s been hard. That is one thing that I have told a lot of people. You can separate yourself as the speaker, the writer, the teacher, and stand pretty tall. But when it comes to being the mom, well, I tend to crumble. I’ll always be Trey and Collin’s mom. That will never be taken away from me. And as hard as it is to explain all of this to Collin right now, we are doing our best for him. I think he understands more than he lets on and that’s okay. I do the same thing when I say I’m okay when I’m not. It’s called self-preservation because no one can walk in your shoes. Believe me, there are days that I wish some of you could!
At the end of the evening, there were many hugs from people who were grateful we had attended the event. I am hopeful our mission resulted in many dollars for the Institute. It was just a small part that Trey and his mom played, but it was our mission that God had ordained. I just pray it is fruitful.
“But you will receive power when the Holy Spirit comes on you; and you will be my witnesses in Jerusalem, and in all Judea and Samaria, and to the ends of the earth.” Acts 1:8
I am so touched each time I read your letters,my heart aches with you and for you. I am the mother of four children and 8 grandchildren,I cannot imagine losing one of them,even though I know they would go to be with The Lord. I truly believe God has a place,a plan and a purpose for every life,Trey had a big mission to accomplish and the way God has used his testimony is so amazing and inspiring. Thank you for sharing,and may God hold you up and give you strength and bless you as you share your son’s courage and faith.
Hugs and love and prayers always to you, Lisa, and your family.
Please be praying for the Cook Family, from Northeast Arkansas. Their precious boy, Noah, gain his angel wings tonight. He was battling leukemia.
I know you could not have imagined this path for yourself…but wow, look at all those Trey has inspired and will continue to inspire! I think of your family often and I am grateful you share your story with others. Continued prayers for you all…