Our son Joshua, now almost five, was diagnosed with a posterior fossa tumor, an ependymoma, in December of 1999. He had started losing weight and would vomit periodically and became lethargic about eight or ten weeks before his diagnosis. He progressively got worse, vomiting more frequently and becoming more and more lethargic. He was finally admitted to the hospital for dehydration and tests were done to try to figure out what was going on.
After two days, an MRI was done and the problem identified. He was scheduled for surgery the next morning, December 31, 1999 - "Y2K". It was like watching a movie about another family. The hospital had been locked down and all sorts of precautions had to be taken because no one knew what would happen with the power, etc. We had been living the Y2K hype for months. I had also just found out that I was pregnant with our fourth child. It was a crazy time. However, the resection was successful and the doctor was able to remove the entire tumor and everything went well.
After the surgery, Joshua was like a newborn with colic. There were so many tubes and things I couldn't really hold him for two days. He was in PICU for two or three days and gradually moved to a regular room. We went home a week later and were more than a little scared. Joshua cried and slept little more than an hour or two at a time for that first three to four weeks. He had a feeding tube for three months, his eyes darted all over and we didn't know if he could see. He could not sit up or even hold his head up. He did not start talking for a year after surgery. I had never heard of cerebellar mutism and had no idea what to expect about recovery. I went home with not a clue as to what we were supposed to do with him next in terms of our daily life, education, rehab, etc. Joshua was not a candidate for chemotherapy as he has only one kidney and the drugs could have damaged his remaining one. He had a cystic kidney removed after he was born (a whole other story!!). So, he did not have chemo but we decided to have conformal radiation to the tumor bed for six weeks after he had recovered sufficiently from the initial surgery. However, two weeks after the initial surgery, fluid started building up again and he had to have a second surgery to do a Third Ventriculostomy (this was done instead of a shunt being placed). This was, thankfully, successful. He was then able to start radiation therapy, which he tolerated very well.
Those first six months or so are a blur to me now as I look back - all the doctor's visits, therapy visits, learning to take care of the feeding tube, the central line (a regular Florence Nightingale!), being pregnant. But I am happy to tell you that I can also look back now and see so much good that can come even in a terrible situation. We received so much support from friends and family and our fourth child, Benjamin, is such a blessing to us. He is a great companion for Joshua and the best therapy! We also found a fabulous Early Intervention program, The Bell Center for Early Intervention, where we live, in Birmingham, Alabama. It is an incredible program that was a springboard for many other good resources and provided so much support. God brought many wonderful people into our lives through this difficult time and our other children will be different people, more compassionate and caring people, because of all our family has been through.
So, now I will tell you "the rest of the story"... Today, almost four years later, Joshua is the happiest of my four children. He is a joy and loves life. He wears glasses, walks with a walker, talks up a storm, is developmentally delayed (about a year behind cognitively and two years behind physically) but continues to make significant progress in all areas. He eats great, is growing (on growth hormone therapy), and is in an early intervention program, which he attends five days a week. And he has been cancer free for almost four years. We have had clear MRI's since his initial surgery in 1999. He is an amazing kid and he has brought so much to our family.
If I could pass on any words of wisdom or encouragement to those facing a new diagnosis with a small child I would say this: