Getting Somewhere

The months spanning from January through April were filled with providing Daniel the best care we could possibly give. After the very intense first few months of his illness were over, I had more time to do research. Wes and I made a good team. Wes left the research up to me, while he spent each day working hard with Daniel, lifting weights with him, taking him outside for exercise, and giving him his supplements. I spent a great deal of time each day learning all I could on the internet about brain and spinal cord tumors. I had gleaned many pieces of information, but the pieces didn't seem to fit together in my mind. One of these pieces had to do with Daniel's tumor type. No matter how hard I tried, I could not find even one case on the internet or anywhere else of a person with Daniel's type of spinal cord tumor. Although medulloblastomas are a fairly common cancer in children, in every case this cancer presents in the brain - specifically the medulla (hence the term "medulloblastoma",or cancer in the medulla). We were still having scattered appointments here and there with Daniel's Emanuel doctors. We asked them this question, and they dismissed us. They said that of course, PNET's are found in the spinal cord, because the pathology said so. But I had yet to find one.

Also around this time, a few people had called or written to tell us about a surgeon in New York they had heard about, named Fred Epstein. We were told that he had invented an instrument enabling him to operate successfully on brainstem and spinal cord tumors. Again, we asked the Emanuel doctors about this. Dr. Olsen, the oncologist, said that Dr. Epstein had acheived moderate success, but most of his patients ended up severely brain damaged or paralyzed. It was as if our questions and concerns were falling on deaf ears, just because we had refused to heed their recommendations on how to treat Daniel.

Daniel had another MRI in March, and it again revealed growth, albeit small. The tumor spots in Daniel's brain had not grown at all since his diagnosis. We felt like the results, although disappointing, still begged the question - why has Daniel survived 6 months, when the professionals told us he'd be gone in 2 or 3? Why is the tumor growth so minimal? Could it be the alternative treatments are working? His doctors said absolutely not. Nothing will treat cancer but chemotherapy and radiation. We had no one to help us. We were left to proceed on our own and to continue doing our own research.

In late April, through the encouragement of several people who had knowledge of Doernbecher Hospital's expertise in the area of treating children's cancer, we made the decision to leave Emanuel. We called Doernbecher and they connected us with Dr. Stacey Nicholson, the oncologist there who specialized in brain tumors in children. He sounded extremely interested to take on Daniel's case, and wanted to see us right away. At our first appointment, Dr. Nicholson had invited Dr. Nathan Selden, a neurosurgeon, to be present. Daniel just sat there with us for a long time as Wes and I related his entire story from the beginning. They were fascinated. Then when we finished, they asked to take a look at Daniel. They performed many tests. The entire time, they were both shaking their heads, and continually saying, "This is remarkable". As they finished, they said the same thing, almost in unison. Your son has remarkable and amazing nerve and motor function for a child with a spinal cord tumor as large as his. First of all, he shouldn't be sitting here (meaning alive) after 6 months. Secondly, he should be at least partially paralyzed. Yet he walks around like a normal, healthy little boy!

Dr. Nicholson and Selden both recommended having another biopsy done. They wanted to wait, though, until after a 3rd MRI at the end of May. We agreed that a biopsy was a good idea. Daniel had his 3rd MRI, and this time, his tumor had grown quite a bit. We were very discouraged and shaken by this. However, the MRI revealed that the spots in the brain had actually shrunk in size! After the MRI, Dr. Nicholson still felt that a biopsy was necessary. So a biopsy was scheduled for the second week of June.

Right after the MRI, we left for California to attend my sister, Bethany's wedding, while fitting in a trip to Disneyland. We had a really wonderful time there. However, Daniel could not hold his head up anymore. His spinal cord was stretched so tight, that it pulled his head down! The pictures of him in my sister's wedding are so precious. He always has a sweet smile on his face, but in every one, his head is falling down and to the side. As a family, we continued in the "live every moment to the fullest" mode. We milked California and Disneyland for all it was worth! We came home exhausted, but happy and thankful for the wonderful family memories that were made there.

Back at home, my desire to do research was stronger than ever. I joined several internet cancer groups - groups for brain tumors, groups to learn about alternative cancer treatments, etc... It seemed I could never get to the end of all the information that was out there on the internet. It was overwhelming. But one day, by God's grace, I finally hit the jackpot - and that will be the subject of my next post.