In July of 2007, the week after Matthew's 9th birthday he was diagnosed with a brain tumor.
That week was so surreal. Matt was perfectly fine on Monday. He went to football practice that evening. On Tuesday he was also great. We took a big group of kids to the movies and did fun things all day long. On Tuesday evening, as he was getting ready for football practice he began to vomit. I geared up for a bout with the stomach flu, but right from the beginning, this 'stomach flu' just didn't feel right. He didn't develop a fever, the vomiting seemed different somehow.... there was too much (I know that sounds weird!), he kept complaining about a headache, and most significantly he was very confused. He kept waking up at different times of day thinking that he was going to church, or starting to get ready for school at 2 am, or turning on the radio and starting to clean his room at 4 am. I took him to the pediatrician on Wednesday and while Matt was clearly sick, he didn't display any of the confusion that I had seen the night before. The doctor sent us home with instructions to continue treating the flu. That day just got worse and worse with the confusion. We had some wildfires right behind our house and firemen were walking through our yard with hoses strewn on our driveway. Every single time Matt would wake up, he would see them outside the window and ask me what was going on. Every. Single. Time. Over and over again I was explaining the situation. That evening we had to drive from our home in Logan to Salt Lake to pick up my husband from the airport. All the way home Matt was chatting with his dad. My husband was also concerned because the questions seemed 'funny'. Matt really seemed 'off'. When we arrived home I sent the children to bed while my husband and I stayed downstairs. About 20 minutes after Matt went to bed, he came bounding down the stairs, "DAD!!! I'm so glad you are home! It's so great to see you! When did you get here?" At that point my husband really got to see what had been going on that day. Matt had no recollection of riding in the car for the prior 2 hours with his dad.
On Thursday morning, I called the pediatrician again and told them I was worried because Matt still seemed sick, but mostly because he seemed confused. I will forever be indebted to this doctor (not my regular pediatrician, his partner, since my pedi was out of the office) who believed me and sent Matt directly to an MRI.
Of course, at that MRI they found the brain tumor. The tech was very professional and didn't tell me anything or let slip that anything was wrong. What he did do was make sure I had a copy of the MRI disk and told me to expect a call from my pediatrician. At that point I knew that something was really wrong. I couldn't bring myself to say or think the words 'brain tumor', but I think I knew in my heart that that's what it was.
We didn't even arrive home before the pediatricians office called and asked us to come into the office. He told us there was a large mass, a tumor, that was causing Matt's symptoms. He told us to go home and get our things and head directly to Primary Children's Hospital, to the Neurosurgery department and that he had already called and that they were expecting us.
I called my father and choked out the words 'Dad, it's a brain tumor'.
At home I was in a fog. I had no idea what to pack. How long would we be there? What would I do with my other children? I remember making Matt get in the shower because he had been 'sick' and hadn't bathed for a day or two. I called my visiting teacher and dropped my kids off with her and my husband and I and Matt made that first drive to PCMC. While on the way, we called our good friend from Boston who was a very well-respected Neurosurgeon. He told us what questions to ask the doctors and he also assured us that PCMC's Neurosurgery team was very very good - one of the best, he said. He gave us a lot of comfort with his knowledge and matter of fact responses.
After his examination, Matt was quickly admitted to ICU. Because of his tumors location, his endocrine function was being affected. His sodium was a staggering 172 (normal is 135-145). Also, his neurosurgeon, Dr.Walker suspected that Matt's tumor had bled, which is what caused the sudden onset of symptoms.
Our life was normal on Monday. Our life was our worst fear coming true by Thursday.
Matt spent almost a month in the hospital that first time. He had his first craniotomy (brain surgery) about a week after being admitted.
In the first 18 months after being diagnosed, Matt had 18 months of various chemotherapies and 3 brain surgeries. His tumor cannot be completely resected. He will always have a brain tumor. It is difficult to know that the beast in there can have spurts of growth at any time.
While we had a roller coaster period of up and down, growth and stability those first 18 months, after his 3rd brain surgery, in December 2008, we had almost two years of peace and of CALM. Matt's tumor was stable. He was able to go without treatment during that time. He has a lot of other serious health issues, mainly stemming from the tumors location which caused Panhypopituitarism. Matt doesn't make any hormones, so we have to re-create them artificially for him. This is a very precise balancing act that takes a lot of involvement on our part.
Last year, in August of 2010, we learned the tumor had started growing again. Matt underwent six weeks of daily IMRT radiation at the Huntsman Cancer Institute. At his six week follow up scan, we learned that the tumor had continued to grow. In fact, the twelve weeks between starting radiation and our six week follow up scan, showed the largest amount of growth we had ever had. At that point, our oncologist was leaving PCMC, and we weren't being given a lot of hope there. No one knew what to try next. We decided to seek treatment somewhere more specialized in Neuro-oncology and our Neurosurgeon steered us toward St.Jude. He helped get Matt in to St.Jude and we started going there in November of 2010. Matt is participating in a clinical trial and so far it has been keeping his tumor stable. In two weeks we go for his final appointment in this 12 month trial.
I honestly don't know what we'll do next. I'm terrified of going off treatment. I hate feeling like we are out of options.
But, in the meantime, Matt continues to LIVE. I am so grateful for how well he does. A new doctor, upon meeting Matt, looked him over and said, "Matt is a perfect example of why you treat the child instead of treating the scan. I would have NEVER put this child with his scans." He looks and does so much better than he 'should'. It's a tremendous blessing.
One of my favorite quotes that I have to repeat to myself over and over and over as Matt wants to do 'normal' 13 year old boy stuff and wants to be independent is, "Why do you spend so much time trying to save a child's life if you won't allow them to LIVE it". It's a hard balance, but one all of you moms understand.
written by Mathews mom, Allison.
To read more about Matthew and his amazing fight you can visit their blog at www.lifewithlittleboys.blogspot.com