He was admitted that day to Stanford Pediatrics Intensive Care Unit because they didn’t want to waste any time. They would explain that he has fluid on his brain and over 100 tumors on his brain and spine. There was surgery to do a biopsy and to wait for the actual cancer diagnosis. What kind was it, what treatment would be needed? In the meantime we spent 2 weeks in the hospital, getting tests, surgeries, ng tube so he would get some kind of food. They hoped to drain the fluid and let his body do its natural thing by absorbing it. But in the end, he needed a shunt. Which the same day he got a port for chemo put in. Then the day came April 22 when we got the actual name of what kind of cancer he had. Diffuse leptomeningeal glioneuronal tumor. A very rare brain cancer. There are very few research papers on it. There is no cure. Tumors won’t go away. Doctors told us this could take him from us. My husband and I sat there in shock, in tears, in disbelief. How, why? How do we tell his brother and sister?
There is no removing the tumors because of how many and where they are located. We just do chemo and hope the tumors don’t grow. He has been on chemo for 3 in half months. He is walking and playing again, smiling, laughing, and being a kid again. There are still tough days. We are trying to live every day making memories and loving each other because the future is so unknown. This cancer has more questions than answers. With help from the National Pediatric Cancer Foundation, I hope we can bring more awareness and raise more money for research for this type of pediatric cancer and all pediatric cancers.”