I know that many of you already know our story, but we’ve made so many new friends recently along this journey so I wanted to give you a little history. The first name of many amazing heroes that will be on my bike helmet is my wonderful son, Tristin. He’s 17 years old(almost 18), just graduated from Chattanooga Arts and Sciences and will be attending The University of Tennessee at Chattanooga this fall! He loves soccer, tennis, swimming, church, and hanging out with his friends and family.
Our journey began almost 5 years ago. I remember in August of 2009, Tristin kept complaining of back pains. After a trip to the ER one evening, it was decided that Tristin’s appendix needed to be taken out. Everything was fine for a few months, but then he started having more pain in his lower back and stomach. The doctor ordered an ultrasound and that’s when our world was turned upside down. There was a large mass the size of a water bottle that was in his abdomen and wrapped around his aorta and vena cava arteries. More tests were done, confirming our worst fears and nightmares…. cancer.
Tristin was diagnosed with Stage 4 neuroblastoma cancer at the age of 13. It’s very rare for someone his age to get this type of cancer, as most cases occur in babies and kids under 2. Neuroblastoma is a childhood cancer of the sympathetic nervous system that causes tumors throughout the body.
We started high dose chemo in March of 2010 at our home clinic in Chattanooga, TN. When it was time for surgery to remove the large tumor, we decided on Memorial Sloan Kettering Cancer Center in New York. Because Sloan is one of the leading hospitals in the world on neuroblastoma and has a team dedicated solely to its treatment, we decided our best hopes and options were to continue there. We spend the following 3 ½ years traveling monthly and sometimes twice a month to NY for many different clinical trials, therapies, high dose chemos, scans, radiation, countless overnight hospital stays, etc….
While in NY, we stayed at our home away from away, The Ronald McDonald House of New York. We’ve met so many wonderful families from all over the world there and made friendships and memories that I will cherish forever…..
As much as we hated leaving Sloan, our treatment options were getting low. We still had a few options left but they were very toxic and would have destroyed his counts for a long time. In Feb of 2013, we decided to come to Grand Rapids, Michigan to see Dr. Sholler. She’s a very compassionate and wonderful oncologist and had several trials that Tristin qualified for. We are currently on the DFMO trial from there and it has been wonderful. Tristin feels great and looks amazing.
Tristin has taught me more about life in the past 4 ½ years as I have ever taught him. I am truly honored and blessed to be his father. I am so proud of the young man he has become and I love him more than anything.
