November is here and my heart becomes heavier each day. It will be 5 years by this Thanksgiving. 5 years, half of his life on earth. I can’t help shivering with the thought: I survived 5 years without him? Then another 5 years with so much pain? 10 years? 15 years?
5 years is also the growth of Joey’s Wings, an extension of his life. On the night before Thanksgiving in 2014, I thought this world was dead. I thought my soul was gone with him. I thought nothing in this world mattered…But children’s lives matter. This world won’t stop spinning because he is not here. Every day, 263 children die from cancer in this world. Every day, families are broken, forever…
In 2015, we established the very first tissue bank of translocation RCC with Johns Hopkins. In 2017, we funded tRCC research with kidney cancer program at UTSW. In 2018, the clinical trial of tRCC started, first time with children. In 2020, we will welcome another milestone: the very first symposium of TFE/Translocation Renal Cell Carcinoma hosted by National Cancer Institute and Joey’s specialist at Cincinnati Children’s Hospital.
After his death, our efforts and the passion of many researchers we met made one thing possible after another: genomic sequencing, animal models, testing of compounds, clinical trial…A cancer that drs in Florida never heard of now has research going on with many institutes across the country. But I have that burning desire in my heart: We need to talk to each other! Cancer research needs conversation, sharing, joint efforts before we could see the breakthrough.
This day is finally coming – I honestly can’t believe its coming. This March at the childhood cancer research symposium in San Antonio Texas, God gives me the courage to share that burning desire with the Chief of the Pediatric Oncology Branch at NCI. She is my champion. She listened to my concern and 3 weeks later, we met with her and NCI’s kidney cancer specialists at DC. 7 months later, the very first tRCC symposium is scheduled.
On April 16-17, 2020, Translocation Renal Cell Carcinoma Symposium will be held in Cincinnati Children’s Hospital, hosted by NCI and CCH, bringing together shareholders, researchers and drs, the very first time with this cancer. I’m sending invitations to all the researchers we have been talking to, including those in China.
I love this photo of David when he first saw our cranes at the San Diego Convention Center. He ran to them with open arms: “Cranes, cranes!” Tears were rolling down my face. Under the cranes, I prayed that the day when I see Joey again, we find the cure.
Thank you for trusting me and fighting with us, my dear friends. You are all my wings, my determination to continue this journey.