Ella Cate's Enduring Angels - In Support of Brain Cancer Research

Our daughter, Ella Cate, was diagnosed with Medulloblastoma in October 2010 at age two and a half. This type of cancer is typically very aggressive. Dr. Gerald Grant performed her first surgery on Sunday, Halloween, 2010. The results were a 100% resection of the tumor and no evidence of disease in the rest of her brain or spine. She went home 5 days later. Her treatment at that time, led by Dr. Gururangan, consisted of four inpatient chemotherapy treatments, outpatient chemotherapy and oral chemotherapy at home, with the grand finale (or what we had hoped would be) being high dose chemo and stem cell transplant in April 2011. At that time, she was treated with a total of five chemotherapy drugs. Unfortunately, we were devastated to learn two days prior to this event in April 2012, that the tumor had returned. She started treatment with an investigational drug (a "targeted treatment" that affects the sonic hedgehog pathway commonly activated in this tumor) which she tolerated well and shrunk the tumor. We knew it would not be a long term cure but were/are still avoiding radiation as would likely have even more negative effects than it does on others her age due to a genetic condition she has. Unfortunately, after 4 months on this treatment the tumor had begun to grow. (As an aside, during that 4 months, she continued with normal life, preschool, soccer, happy -smiling -affectionate Ella Cate.) After the MRI revealed the growth, surgery was scheduled for following week in early September 2012. We made a quick trip to Emerald Isle, NC before facing another tiring journey. She had another 100% resection by Dr. Grant and we went home 3 days later with no problems. She was back in preschool two weeks later while awaiting the next treatment to start. She is currently being treated with immunotherapy, where Duke doctors and researchers have created a vaccine from her brain tumor and T cells. Essentially, her immune system will hopefully learn to fight off the tumor cells. The vaccine took about four months to produce and she received chemotherapy, both inpatient and oral during that time. She produced more vaccine than anyone else in the treatment so received much more than the typical 3 vaccines. She completed her monthly vaccines in August 2013. She is happy to have completed them as the two interdermal shots in the groin area were quite uncomfortable. She despised them and we had to help hold her down which has been one of my least favorite jobs during this journey. Again, and I REALLY hate to have to say again, but we have been so fortunate in that she had almost no complications and tolerated the various treatments very well. The vast majority of time you would never have known she was a cancer patient with the exception of her hair loss! It has been another challenging journey and very difficult at times despite the fact that it is going well. She has now been a cancer patient more than half her life and doesn't remember when she didn't have a port (the central line that chemo etc. goes through). Her recent MRI Jan. 31 2014 was clear!!!! She is doing well in and thoroughly enjoys kindergarten! The next MRI will likely be will be end of May. We GREATLYappreciate your support as we look to contribute to the organization that facilitates the critical research and clinical work of the amazing doctors and staff we have come to know at the world renowned Duke and theTisch Brain Tumor Center.