I am the parent of a child with cancer. I call myself a MOMCOLOGIST (but I can’t take credit for the term) because I am my child’s primary caregiver and advocate. There is a slew of people involved in my son’s cancer treatment – oncologists, nurses, physicians assistants, surgeons, psychologists, radiologists. These people, along with our supportive community of family and friends make up Cole’s Team versus cancer. And as his MOMCOLOGIST, I am the captain of that team! I take this job seriously. As my son’s best advocate, I have had to educate myself on things I never dreamed I’d learn or understand. I’ve had to make difficult decisions, question doctors, and keep my own organized medical records.
My son was diagnosed in 2006 with a rare cancer called Desmoplastic Small Round Cell Tumor. He was diagnosed as STAGE 4 (metastatic disease) and had a prognosis of less than 2 years based on existing research for his diagnosis. Cole was originally treated with chemo, an aggressive surgery, and radiation, that got him to No Evidence of Disease in 2007. He remained cancer-free until two small spots were found on a routine scan in September of 2010. Since that time Cole has had more chemo, surgery with the novel HIPEC procedure, a bland embolization of his inoperable liver tumor, and participated in an investigational study of CAR modified T cells therapy. In March of 2013 PET/CT scans showed progression of the liver tumor, and we began treatment on the oral targeted inhibitor Pazopanib. Three months later the tumor had further grown, and we switched to his current chemo regimen of Sirolimus, Cycloclosphomide, and Metformin. In October 2013 scans showed the liver tumor at its highest activity level since recurrence and even larger. We consulted with interventional radiologists and heptabilary surgeons at Levine Cancer Institute and are now planning to return to Charlotte, NC for surgery to remove the liver tumor. Dr. Martinie’s team there is confident it is now resectable as they are better able to see that the nearby vascular system is not involved in the tumor and are excited to join Cole’s Team. We soon will get Cole CANCER FREE for the 2nd time after we celebrate his 13th birthday!
I plan to blog about some of our cancer experiences, but the LONG story of our journey and current updates on his treatment can be found at the online CaringBridge journal I’ve kept since 2006. Cole’s CaringBridge site