Matt's (very long) story!

In July of 2007, the week after Matthew's 9th birthday he was diagnosed with a brain tumor.
The week started out very normally. On Monday Matt went to football practice. On Tuesday the boys had some friends over (incidentally, these friends were friends from Naperville. They had come to UT because their sweet little 15 month old cousin had just been diagnosed with Leukemia. We had been watching the children while their mother went to Primary Children's Hospital to be with her sister and nephew). That evening I sent Matt upstairs to get ready for football. He was taking a long time, and when I called up to him to see what was going on he told me he had thrown up and wasn't feeling well. I cleaned him and the bathroom up and braced myself for a week of the stomach flu. Immediately, this 'illness' just didn't feel normal. I called the on-call pediatrician that night because Matt's temperature was quite a bit lower than normal, rather than the fever I was expecting. That night Matt also woke to vomit/dry heave at least once per hour. The episodes were violent - much worse than any other 'flu' my children had ever had. Upon waking up Matt's behavior was also strange. He kept asking what day it was, saying strange things about 'getting ready for church', and at 3 a.m. turning the music on loudly. I called our pediatrician early the next morning and they had Matt come right in. While walking into the office, Matt began to panic saying, "but mom, I haven't finished my talk, yet". I explained several times that we were at the doctor and not church. When it was our turn to be seen, Matt calmed down quite a bit. He certainly 'looked' sick and was acting sick, as well. The doctor questioned him fairly extensively and Matt acted normal (of course!) The doctor decided to check Matt's blood sugar because low blood-sugar can cause confusion. Of course that came back normal and so we were sent home with instructions to continue treating Matt's flu. Matt slept the entire day, but when he would wake up was still acting very confused and complaining of a severe headache. That evening we had several big fires behind our home. The smoke was everywhere, the neighbors were all outside, and the fire truck was right in front of our house with the hose stretched across our driveway - Matt asked continually what was going on. No matter how many times I explained about the fires, he was asking again moments later about what was going on. Eventually we were evacuated from our home until the fires were brought under control. At this time I loaded the boys into the car and decided to head to SLC to pick up Warren from the airport (he had been travelling for work during the previous days). We stopped by my parents house since we had a little extra time and both my mother and father were concerned at Matt's strange behavior and comments. Once we picked up Warren, he also became really concerned. Matt was asking repeatedly what day it was and saying bizarre things out of the blue. Probably the strangest incident happened after we arrived home. I put all of the boys to bed and was downstairs in the kitchen talking with Warren. Matthew came bounding downstairs, gave Warren a huge hug and said, "Dad, I'm so glad you're finally home - I missed you!" This was a sweet gesture, except for the fact that Matt had just ridden in a car with Warren for 90 minutes and talked to him the whole time! We determined to take Matt into the doctor the next day (at this point it was past midnight). The next morning I called the pediatrician and, to his credit, he sent us right to the hospital for an MRI and blood work. He did not see any of Matt's strange symptoms and I will always be grateful to this man who trusted me when I said something was seriously wrong and sent us for an MRI. During the MRI it was clear that something was very wrong. Everyone was too quiet, it was taking too long, they had to add dye for 'contrast', and after the MRI the tech took me aside and told me to make sure I called Matt's primary doctor right away if I didn't hear from him first. He also gave me copies of the scans on disk to take with me. I was terrified, but at that point I think I knew that it was a tumor. We hadn't gotten more than a mile down the road when I received a call from our pediatrician asking us to come to the office right away. I remember feeling like this was some sort of nightmare or soap-opera and couldn't actually be happening. When we arrived at the office, we were taken back immediately and the doctor told us bluntly that there was a large tumor on Matt's brain, the neurosurgeon at Primary Children's hospital had already been contacted and would be waiting for us. We were to go to SLC right away. Upon leaving the office I called my dad and sobbed out, "it's a brain tumor, dad." He called my mother, sister, and brother. Warren called his mother, who in turn called his sisters. We went home, packed a few things (do you go home if you are just diagnosed with a brain tumor........? I didn't know either!) Matt showered, I called my visiting teacher to ask her to take my other boys, and we left for Salt Lake. On the way there we called a Neurosurgeon friend from Boston. He was immensely helpful, telling us what questions we should ask, and also highly recommended the neurosurgery group at Primary Children's. When we met with the neurosurgeon it was a whirlwind of information, unknowns, and an admission to the PICU (pediatric intensive care unit). During this whole process my mind was spinning and all I could think about was the fact that 3 days ago my son was healthy, active, and had just gone to football practice, for goodness sake! Boys who go to football don't end up critically ill and in ICU the same week!! The next day Matt had more extensive MRI's that showed the tumor had bled (which caused the sudden onset of symptoms so was a blessing in a lot of ways) and also that the tumor had spread beyond the 3rd ventricle, wrapped itself around the brain stem, and seeded into his spine. This was all very bad news and at that point I broke down - things hit me hard at that moment and I believe that was the lowest point of this journey so far, for me. We learned that a traditional biopsy, where they drill a hole in the skull, insert a long needle, and extract a tiny piece of tumor, was not an option because of the bleeding. The neurosurgeon didn't want to go poking around in there unless he had total control. So, the decision was made to perform a full craniotomy, but not resect (remove) the tumor - only take a tiny piece to biopsy. The next Wednesday (8/8/07) a craniotomy was performed. The surgeon removed a bit of tumor, cauterized the bleeding, and also removed several blood clots. Matt recovered from this surgery remarkably well. Only 3 days post surgery he was walking to the bathroom (with support) and was eating a normal diet.
That same month Matt started the 4th grade and also started chemotherapy. If you want to read the whole story, the blog entries begin on August 8th. Since then, I have tried to maintain updates.