Life changed for our family in April 2009. We - my husband and I and our two children, Lauren and Cole - had just returned from a Disney Cruise. Cole was limping around a bit and complaining his back was bothering him. He had fallen off his bunk bed, so we thought that might be the culprit, but we took him to the doctor to be sure. There was nothing conclusive about the results of the doctor's visit, so we returned home.
I remember the following day vividly. I was at work and my husband was working from home. He called and told me Cole threw up, and we needed to go back to see the doctor right away. It was one of those “pits in your stomach” moments when you feel deep down inside that something was really wrong. The doctor did an x-ray... and I saw the tumor on the screen. It was the size of a softball. I asked the x-ray tech about the spot and she shuttled me back to the office to see the doctor. We were immediately sent for a CT scan and the pediatrician mentioned the word neuroblastoma. Discussions with the doctors swirled and the following week tests confirmed our fears. Neuroblastoma in Cole's abdomen, lesions all over his bones and bone marrow involvement. A Stage IV cancer diagnosis.
We started treatment immediately at Riley Children's Hospital in Indianapolis, which is only about an hour from our home. Some advice from another cancer mother prompted us to contact Memorial Sloan Kettering in New York as quickly as possible. By July, we had an appointment, and we made our first of more than 60 trips to New York City. In August 2009, Dr. LaQuaglia and his team removed 95% of Cole's tumor.
Unfortunately, after eight rounds of high dose chemotherapy, the bone marrow was still not clear. It wasn't worse, but it wasn't any better. We started trying some of the experimental drugs, such as hot 3f8 (a radioactive antibody), and followed it with low dose chemotherapy. The bone marrow cleared in early 2011 and has remained that way.
Cole's scans, however, still showed signs of disease and more experimental treatments didn't result in change. It was determined Cole suffered from chronic neuroblastoma. He continued many, many treatments. I remember at one point during his intense sessions, he stopped breathing.
In July 2012, a small spot showed on Cole's rib. The doctors removed the rib and started Cole on an oral chemotherapy and a phase I trial. He did well for nearly a year, until April 2013 when a new spot showed up in the same place the rib was removed. Treatments of a new promising antibody Hu3f8 followed, but after four rounds, Cole's cancer progressed again. Since then, we switched his care and now continue to search for Phase I clinical trials to keep his cancer at bay.
Through all of the days, months, and years of surgeries, treatments and hospital stays, Cole has never once asked why he has to do this. He takes one day at a time. He is thrilled to do something normal, like go to school or play Xbox with his friends. Cole is definitely an old soul and has spent so much of his growing up years around adults so he enjoys adult conversation. He also loves to eat! Cole dreams of being a chef, and he often talks about opening a seafood restaurant in Florida. He is a great cook – something he gets from my husband – and he regularly cooks for the family. Cole’s salmon and crab cakes are amazing! When he is not cooking, you’ll find him watching one of the countless cooking shows on TV. Through our many trips to NYC, we became regulars at Mesa Grill, Bobby Flay’s restaurant. The staff all knew Cole and his love of duck! It got to the point when Cole’s duck would be ready for him as soon as we sat down! When Bobby Flay’s new restaurant Gato opened, we of course had to try it. Bobby Flay came out to meet Cole. It was an amazing experience and affirmed Cole’s desire to be a chef, and he really wants to be on Chopped!
We need a cure for cancer. We need more treatment options. We are passionate about being a part of Cookies for Kids’ Cancer and finding ways to raise money for research. We are thankful to all the supporters all over the country trying to make a difference.