Tuesday, January 22, 2008

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.

Thursday, December 28, 2006


For Christmas, Matthew received his heart's desire from Santa. He got a Game Boy Micro with a Pokemon game! He has been playing it continually for 2 days, but yesterday, he got in trouble for a little 'attitude' problem and his Game Boy was taken away for today. This morning, Matt was telling me how disappointed he was that his Game Boy was confisticated.

I think he meant confiscated. :-)

Tuesday, October 17, 2006

Well, I guess you can read it that way!

Today I was reminded of something hysterical that happened this summer!

While Matt and I were shopping for school clothes at the mall, Matt's attention was drawn to the wall of T-shirts emblazoned with sassy sayings. He was reading and chuckling at all of the "Blame my brother" and "My dog ate my homework" shirts when he came across a shirt and was adament that, "Mom, you just have to get it - it's perfect for you!" Since I hadn't really considered any of those shirts appropriate for a mother of four little boys, I was curious to see what had captured Matt's attention in this way.

The shirt read:

"Too many boys, too little time."

Maybe it was applicable after all! :-)

Monday, October 16, 2006

Mr. Smartie Pants

I know that everyone thinks their children are gifted. Today, though, we got some news that PROVES Matt is as smart as we have always thought he was. In the third grade, the kids take their first standardized test - the 'Cognative Abilities Test'. There is no preparation for it, it is just a general test to determine children's natural abilities. I was shocked, and thrilled to receive the results today. Matthew scored in the 99th percentile NATIONALLY! That was for verbal ability - we always tease Matt about talking too much. :-) There were two other sections of the test, non-verbal ability and quantitative ability. He scored in the 92nd percentile and the 89th percentile in those - both well above the national averages. His composite score (so his overall ability) was in the 97th percentile. I am just so proud of him!

Tuesday, October 10, 2006

The world according to Matthew

As the oldest brother, Matthew enjoys a certain amount of hero-status among his younger brothers. They often ask him questions and he enjoys giving long lectures to them - mostly on things like Pokemon attacks and the characters in Star Wars, etc... In the last 3rd grade book order, Matthew purchased the All new, 2007, Guiness book of World Records. As a trivia buff, these sorts of useless facts are just the type of thing Matthew enjoys collecting in that brain of his. In the car this afternoon, Matthew was explaining some of his new-found knowledge to William. Since we have twins, multiple birth families are of some interest to us. In Matt's book there was a woman who gave birth to SEVEN babies at one time. "You know what that's called, Will?" Asked Matt. "It's called 7-up-lets." I think the family might need to be alerted to this fact, since they've probably been calling their children septuplets. Also, I think the Coca-cola company might like to know they could possibly use this family as advertisement for their popular soft drink! :-)

Sunday, October 08, 2006

Grandma's house . . .

Matthew is upstairs in bed - he has been sick the past 2 days. I just went up to talk to him about our Thanksgiving plans. Warren and I just decided that we would go visit family in UT and ID for Thanksgiving. Then, since this year is our 10 year anniversary the day before Thanksgiving, Warren and I are going to take a little trip to AZ for 4 days and leave our children with our families. Since 4 rambunctious little boys are a tall order for anyone, we decided to split them up. The older two boys are staying in ID with Warren's mom, and the twins will stay in UT with my mom. As I was talking to Matt about this plan he said, "I just love staying with both my grandma's!

At Grandma Julie's:
She has lots of movies,
She tickles me,
She takes us places,
She's nice,
We get to see Grandpa...

But at Grandma G's:
She has that great big garden,
She has those apple trees,
She puts Torani syrup in our milk,
We get to sleep downstairs,
There is a soda machine,
She has horses and cows...

If I had to choose, I really can't decide. I love staying with both my Grandma's so much!"

Sunday, September 10, 2006

The building of a testimony

In Primary, the children have the opportunity each week to share an experience that "Likened the scriptures unto themselves."

This week, we had an experience that Matt wanted to share. Since he recently turned 8, he has started fasting. Typically, we fast on the first Sunday of each month, and any other time we feel we need/want to. Matthew was able to fast in both August and September. His Aunt Megan has been terribly ill - she almost died and has been in total kidney failure and on dialysis for the past 6 weeks. They were beginning to search for a kidney donor. So, in August our family, along with extended family and friends of Megan had a massive fast for her health. This was Matthew's first opportunity to fast. In September, Matt also decided to fast for Aunt Megan. This past week, we received a tearful telephone call relaying the miraculous news that, against all odds, Megan's kidney's have regained much of their function. They are putting her on 2 day/week dialysis and in 2 weeks re-evaluating. If her numbers have stayed the same, she gets to come off dialysis and will most likely not need a transplant. When I sat down to dinner with my boys and shared the news, Matthew excitedly pointed out that it was probably because of all of the fasting and prayers on behalf of Megan that she is recovering in such a way. I had to agree. I love to see these types of spiritual experiences in my children's lives. This is the way testimonies are born, and the way they grow. I am so thankful for these moments!

In Primary, Matthew shared a scripture about fasting, and told the story of his Aunt Megan recovering. It was so sweet and he did such a great job! More than one person came up to me afterwards to tell me how impressed they were with my son. I am proud of him, as well!