I was very blessed the other day to speak at Children’s Hospital of Pittsburgh’s annual UnWined event. This event raises funds to find a cure for pediatric cancer. I couldn’t have been more honored to be asked to speak and was incredibly blessed by the evening. I had mentioned in some previous posts that I was going to be speaking. I figured that I would give you a written version of what I said at the event. After Paul Alexander introduced me, I prayed (inwardly), took a deep breath, and headed to the stage. I began…
“You might be sitting there and asking, like me, ‘Why am I here?’ When Tiffany and Debbie asked me to speak I was a bit perplexed and reminded them (which was very unnecessary) that my story did not end well. They told me that to just bring out survivor after survivor was not an accurate portrayal of this hideous disease. Many children do not make it and people need to realize that. That is an amazing testimony to what great women of integrity that they are.
Shortly after Trey was diagnosed I believe that God spoke to me, not audibly but almost. John 3:16 came to my mind. ‘For God so loved the world that He gave his only begotten Son.’ If God gave his one and only Son, and He may require one of my two, who and I to say no? A little while after I thought, ‘Which would bring more glory to God? If Trey were to live and we gave him all of the credit, or if he didn’t live and we stayed faithful to him? This gave me shivers and was the first inkling that Trey was not so survive. I also had a lot of training in emotional needs. I spent a lot of time, as Carnegie Mellon professor, author, and cancer warrior Randy Pausch put it, ‘building nets’ for Joe and Bella to fall on if and when Trey died. We have an amazing family, an incredible extended family. We have a church community that supports and loves us so much. Our schools have cared for and loved Joe and Bella so much. Our community has shown unbelievable love for us. A church, fire hall, and bar all put signs up supporting us after Trey passed. Given all of that that we had and have going for us, one and a half years after Trey passed, we are…ok. We are not great, no, we’re not even good. We’re ok.
Rachel still has to answer the question, ‘How many kids do you have?’ Joe had to answer, ‘Where’s Trey?’ when a small child asked him. Romans 12:15 tells us to, ‘Rejoice with those who rejoice, mourn with those who mourn.’ I love to comfort people in their times of trial and sadness. Because of this hideous disease I can’t be there for those battling cancer. To them, I am a constant reminder of that which they dreadfully fear and hope never happens…people die from cancer. However, we have it better than most.
Families are torn apart from this disease. Parents divorce, children struggle, communities mourn. The devastation extends far and wide. The loss of a child is more than enough reason to eradicate cancer. Yet, it is far more than that. I stand and speak here today for all of those parents who don’t have the resources that we do and did.
So now you may wonder, Why am I HERE? Why aren’t I angry, bitter, resentful? Don’t I hold CHP accountable for the death of my child? Far from it. I am ever so grateful for the expertise, support, and love that we received. Trey was diagnosed in 2010, in late 2011 it was apparent that the chemo and surgeries were not working. I asked, cajoled, threatened our Oncologist Dr. Shaw into telling me how long Trey had left. Eventually he said that kids in his condition had one, maybe two years left. Trey made it 3 years longer.
Not only did Children’s Hospital add to the quantity of his life, but they improved the quality of his life as well. Because of all that they did we were able to go on many great vacations. I have set myself for a lifetime of expensive vacations so that Joe and Bella don’t say, ‘I see, Trey passes away and we no longer go on vacations.’
Once all treatments were exhausted but shortly before we were to begin hospice, Trey passed away suddenly one night. However, he died not knowing what cancer was, never knowing that he had it, and certainly not knowing his diagnosis. How was this possible when he spent so much time in the hospital? It was because they knew him for the person he was, not the condition he had. An example of that was once all of the treatment was over and we were out of options, Rachel heard of something experimental in Texas. She asked Dr. Shaw about it. He replied, ‘Rachel, I wouldn’t send my worst enemy there. What they are doing is wrong and unethical. You have to understand, I would take Baby Trey to the moon if that could heal him.’ I quote him not to point out his commitment to Trey’s treatment and health, but because of what he called him, Baby Trey. Trey was six years old at that point. He was no baby. But he was in the eyes of so many. So innocent, so pure. He (Dr. Shaw) and they (Children’s Hospital) loved Trey. For that I am forever grateful.
Whenever you make an investment you have to make sure that it is wise. Whether it be financial, real estate, business, whatever, you want to make sure that your money is in the best place possible. Please understand, with Children’ Hospital of Pittsburgh, your philanthropic investment is well earned and deserved.
This brings me to WHY I’m here. You see, somewhere in Pittsburgh today, a parent heard those words no one should ever hear, ‘Your child has cancer.’ Somewhere in Pittsburgh today a child was born with Neuroblastoma, the same cancer Trey had, and no one knows it. Children’s Hospital did their job, now it’s time for you to do yours. Because, when we beat cancer, and we will, you can say, ‘I helped do that! I contributed to the studies that finally destroyed that disease! We did that together!’ Then when that family hears, ‘Your child has cancer’ they can also hear. ‘…and it’s 100% treatable. Please give however you can. Thank you.”
The crowd was very receptive and the rest of the evening was great. I am always burdened by the number of stories people have and how much hurt is in this world. I really wish we all shared them more. We were able to raise a lot of money that will go to incredibly good use. I am forever grateful to Debbie DePew, Tiffany Casarcia and all of the great people at Children’s Hospital for giving me the opportunity to speak.
ps-you can always give to CHP’s Cancer and Blood Disorder Auxilery here.