Wednesday, August 08, 2007
This is a difficult post. I have been meaning to update my blog for ages, but a TON has happened. However, updates on those major changes will have to wait for another time because one week ago my life as I know it changed dramatically.
Tuesday of last week I was the mother of 4 happy, healthy, active little boys. Matt had just started football, we had started shopping for the new school year, and I was a bit obsessed with baby gear (I am almost 30 weeks along with baby #5 - one of my "I've gotta blog that" major updates). After dinner on Tuesday, I sent Matt upstairs to get ready for football practice. He seemed to be taking a long time so I called up to him to find out what was wrong. He called back that he had just thrown up. I helped him get cleaned up and prepared myself for a week of the stomach flu. That night he continued to be violently ill - throwing up or severely dry heaving every hour. He also did some strange things, like turn the radio on loudly at 3 a.m. The next morning I called the Pediatrician because Matt seemed confused. He kept asking me what day it was, and saying funny things out of the blue. They had us come in right away and OF COURSE Matt acted fine in the office. He was answering all of the doctors questions perfectly. They tested his blood sugar (normal) and sent us home with instructions to continue treating his 'flu'.
That day, Matt's strange behavior continued. He was very tired, but when he woke up he again didn't know what day it was. That afternoon we had some major fires in Cache Valley that were right behind our home. Matt seemed very confused about the fire - I kept having to remind him that there WAS a fire. The fire truck was in front of our house, with the hose stretching across our driveway. The other boys were fascinated, but Matt couldn't quite figure out what was going on. He kept asking why the trucks were there! That evening we were evacuated from our home for several hours. During that time we drove to Salt Lake (Oh, yeah, we moved to Utah - another major update) and picked up Warren from the airport. On the ride home, Warren became very concerned with the repetition of the same questions over and over. One of the oddest things that happened was when we arrived home. I went upstairs to put the boys to bed. I came downstairs and Warren and I were talking in the kitchen. Matthew heard us and dashed down the stairs. "Hi Dad, he exclaimed. We have missed you so much while you've been gone!" He had just been in the car, talking to Warren for 90 minutes. We determined that I would take him in immediately the next morning (at this point it was after midnight).
Thursday morning I called the Pediatrician again, explaining Matt's symptoms and insisting that we needed to be seen again. I was so relieved when they decided to send us directly to the hospital for an MRI and some blood tests. During the MRI it was clear to me that something was dramatically wrong. The MRI was taking way too long. After quite awhile they decided to inject dye for 'contrast'. After the MRI the tech repeated several times that I needed to call my doctor right away, if he hadn't called me first. He was also sure to give me copies of the MRI scans on CD - I'm pretty sure that isn't 'normal' procedure. We left the hospital and the pediatrician called me before we even arrived home and asked me to come to the office right away. With shaking hands and a sick feeling in my heart we went to the office (Luckily, Warren was with me because that morning the car wouldn't start - of course - so Warren drove and dropped Matt and I at the hospital.) They had us come back right away and the doctor delivered the devastating news, "I'm not going to beat around the bush", he said, "Matt has a fairly large growth on his brain. You need to go to Primary Children's Hospital right away, here is the name and phone number of the Neurosurgeon. They will be expecting you." I felt like I was in a fog as we left the office. We went home. On the way I called my mom and dad and Warren called his mom. We tearfully told them that it was a brain tumor and that we were heading to Salt Lake right away. I called my visiting teacher (thank goodness for visiting teachers!) and she took Will, Nate and Drew. We packed a bag of a few toiletries and changes of clothes (I didn't know if they ever sent people home with brain tumors......???) I had Matt get in the shower. Since we had thought he had the flu, he was looking and smelling really 'sick'. A few minutes later we were on our way to Salt Lake.
When we finally got in to see the Neurosurgeon, the news was quite bad. Matt's tumor was fairly large (3 cm, they estimated) and was in a very bad spot. It was right in the center of the 3rd ventricle, blocking the flow of spinal fluid, and affecting his hypothalamus (the hormone regulating part of the brain). He had a pretty dramatic sodium level (indicating that his kidneys were not functioning well). He was admitted to the ICU right away. We spent the next day getting tests (CT scans, more MRI's of the brain and spine, and lots of opthamological testing to see if the tumor was affecting his eyes). That was a bad day (Friday). Matt did not do well with the anesthesia. He needed more then they anticipated, he woke up more quickly then he should have, and he was very MEAN and STRONG when he woke up. Warren and I peeked into the MRI room and there were SIX people holding him down!!! It was an awful day. The worst part, though, came at the end when the neurosurgeon came in and with a grim look told us that the tumor had bled (causing the sudden onset of symptoms) and that it had also seeded and spread down his spine and there was another tumor wrapped around his spinal cord. I have never felt a blow like that in my life and I broke down and sobbed uncontrollably. Because of this news, it became impossible to continue with the plan of an endoscopy (where they drill a small hold in the skull and extract a tiny piece of the tumor using a long needle) on Saturday morning. Instead the doctor decided to try to get a diagnoses with spinal fluid, hoping that the fluid would show what type of tumor was there.
Saturday and Sunday were pretty good days. I just kept thinking:
No news is at least not bad news...
Sunday morning Matt was moved out of ICU because his sodium levels had stabilized. I was a bit shocked when he was moved to the 'Neuroscience Trauma Unit'. That unit name was a big dose of reality for us. I guess I imagined him going to a unit mingled with 'regular' sick kids. I know it's where he needs to be, but it was still a shock to be there!
Monday afternoon we learned that the spinal fluid had all come back 'normal' despite being cloudy and bloody. At first my heart leaped at this news, until the doctor explained that this only showed that they were simply not finding what they already knew was there. They decided, after much discussion that they needed to do surgery because they couldn't treat the tumors until they knew for sure what they were. I suppose that I always thought a tumor was a tumor and that they were either benign or malignant. Apparently there are over 100 different types and then different classifications within each type. They can also be 'mixed' types. So, it is extremely important to find an accurate diagnoses so the proper treatment can be given. A Craniotomy was scheduled for Wednesday afternoon.
Tuesday was another good 'waiting' day. Matt was cheerful and comfortable. He had a few visits from friends, and we had a little birthday party for Nate and Drew (their 4th birthday is the same day as the surgery!) out on the patio at the hospital. It was a good, but difficult day. I didn't realize how hard the birthday party would be. Luckily, Nate and Drew were happy with their party and thrilled with their little gifts and Transformer cupcakes from Wal-mart. My mind just kept going over how quickly life can change. In literally the BLINK of an eye, my entire life and focus have changed. I am also shocked by the frailty of this precious life. I know that I will not take my sweet (but LOUD) little boys for granted anymore!
I am going to try to keep this blog updated at least once a day for those who are worried about Matthew. We appreciate the concern, love, and especially prayers given on behalf of our family and Matthew. We feel the support of all of you - even those far away.