Sep 11, 2009 Latest post:
Jul 21, 2014
Christopher Grimes, now age 7, was diagnosed with stage IV Neuroblastoma, a deadly form of cancer, in September, 2009 when he was 4 years old. After multiple rounds of chemotherapy, 2 stem cell transplants, 20 rounds of radiation, and 6 months of antibody therapy in the ICU Christopher reached NED status (No Evidence of Disease).He relapsed after 22 months of NED. Not many people think it's possible for Christopher to live. Let's prove them wrong! Christopher was born premature. We learned to change his diaper through an Isolette. He was fed through a tube in his nose. Things were hard in the NICU, but not as hard as they would become years later.
Christopher grew and thrived. He was the tallest in his pre-school class. While he went through a year long stint of a runny nose, nothing was ever wrong with him. He was a normal child born early. We thought we had seen it all, so when Gillian, preemie #2, came along, we were pros. "Nothing can surprise us now," we thought. We were wrong.
Right before Christopher's 4th birthday he developed a limp. We took him to the doctor (the limp was nowhere to be found when we brought him in) and they examined his joints. One day he'd be stiff, sore and irritable, and the next he was his old self, doing karate kicks off the couch and laughing from 6am to 8pm. It came and went. So whatever it was, it couldn't be that serious, right? Wrong again.
We continued to go back and finally demanded some blood tests. Based on internet searches I thought he had Lyme disease or Juevenile Rhuematoid Arthritis. I thought my world had ended.... I wish his diagnosis was that simple.
We had blood tests done and the pediatrician sent us to a specialist at Fletcher Allen in Burlington, Vermont. They tested again for arthritis. No signs, but based on what we were insisting, they took more tests. Blood work results pointed toward Leukemia. Again, not the case. We were going for another round of tests and Christopher needed general anesthesia for it. He had a bit of a cough so they took a lung X-ray to make sure it would be OK for anesthesia. That's when they saw IT. The tip of the tumor. Plans changed immediately.
On September 11, 2009, Christopher had CT scans, X-rays, etc. They were sure they were looking at a Neuroblastoma, but couldn't say with certainty without meeting certiain criteria. That was a Friday afternoon at 4:55pm. We immediately requested records of all tests before the weekend and moved our family of 5 (CJ, myself, Christopher 4, Gillian 18 months, and Daniel 2 months) to Boston to be treated at Boston Children's Hospital. We uprooted our family of 5 in less than 24 hours.
Our life used to be great. We own the Stowehof Inn, a hotel in Stowe, Vermont. It's a place where people have weddings, take vacations, go to relax. Now our own dreams have turned into nightmares as our son faces a cancer where the odds are clearly against him. Chances of long term survival were less than 25%.
To date, Christopher has undergone eight rounds of chemotherapy, surgery to remove the primary tumor, an unplanned bowel obstruction surgery that led to a week in the PICU, two stem cell transplants (each are month long stays isolated in a hospital room) and then 20 rounds of radiation. He finished six months of antibody treatment, which is a painful therapy that attacks the nerve cells and kills off remaining neuroblastoma cells. Christopher started a low dose chemo as "preventative maintence" through our oncologist, Dr. Giselle Sholler at Fletcher Allen. He was one of the first children to be cancer free to try continued treatment to prevent relapse. His ability to do this was majorly funded through donations to Dr. Sholler's research. Christopher has done 1.5 cycles of the chemo before accute sinus infections which started in the fall became a problem. On August 9, 2011 he had surgery to drain his sinus cavities, remove his adnoids, and more. Because he was diagnosed as Stage IV, Christopher will never be "cured". The best we can hope for is NED (no evidence of disease) status. Unfortunately, 70% of those lucky enough to reach NED status relapse, and the prognosis and survival rates for those children who do relapse are poor. Relapse is deemed to be "incurable."
Christopher relapsed in October of 2012 and continues to get treatment with Dr. Giselle Sholler who is now at the Helen DeVos Children's hospital in Grand Rapids, Michigan. Our family travels from Vermont to Michigan every few weeks for scans and new trials. Things could be going better but we will never give up hope! Sincerely, Kristin, CJ, Christopher, Gillian and Daniel Grimes