When Tyler was 9 he started having partial onset seizures where he remained conscious and fully aware of his surroundings. He had convulsions which usually lasted 1-1 ½ minutes. They wore him out, and he usually got a pretty bad headache afterwards. He endured many medications to try and control the seizures. At that point in time he was able to live a pretty normal life. Don’t get me wrong, the seizures were always on his mind, but Tyler was not going to allow this to control his life. His neurologist tried very hard to keep our hopes up that this was just a childhood seizure disorder and there was a strong possibility he would grow out of this.
Within the past year Tyler’s seizures have changed, progressing into Grand-Mal seizures. The first one of these seizures I saw Tyler go through, I went into a state of panic because I thought I was losing my son. He now experiences full body convulsions, loss of conscience, his eyes roll back, and his lips turn blue because his body is so tense he can’t breathe. It can take up to five minutes for him to regain consciousness and when he does, he does not know who he or anyone around him is. As a mother, this is the hardest thing I have ever faced. The other change that happened in Tyler’s life was that he started high school. Tyler had experienced seizures at school before, but high school is very different. It was a difficult transition for Tyler to face. No matter how much Tyler did not want this to control his life, he knew it would. Tyler is now attending school through a home-bound program, and has decided to put sports on hold until he is a little more stable.
Tyler’s neurologist decided the changes with Tyler warranted a referral to the Children’s Hospital (CH) in Denver. At our first visit to the CH we were given a few different options we could try to control the seizures, but we were told the likelihood of those options working were slim. Dr. Knupp, his neurologist at the CH, thought our best approach would be to have Tyler attend an EMU (epilepsy monitoring unit) where he is monitored via EEG 24 hours a day in order to capture a seizure on record. With this record they could determine Tyler’s candidacy for brain surgery to remove the portion of the brain that was triggering the seizures. That was my first “oh my goodness” moment. Tyler was in the state of mind that he did not want to know all of the details he just wanted them to fix it.
Upon arriving to the CH to undergo the EMU, they also ran an MRI with contrast. Tyler was diagnosed with a tumor from this MRI. I will never forget the moment the doctor informed us. Tyler was still in the mindset that he did not want to know, his words were “please just fix it!” I must have looked as though I was going to go into hysterics because the doctor was quickly trying to convince us that finding this tumor is a blessing. He stated that many people have seizures and the doctors are not always able to find the reason why. I would give anything for Tyler not to have to go through this. I want him to live his life without conditions. He has faced enough already! My other son Andrew has also witnessed his big brother and best friend endure all of these events. Tyler could not be any luckier to have such an amazing brother. Andrew also deserves to be able to live his life without having to worry about his brother.
Tyler is scheduled to go back to CH in January for more EMU testing before surgery.
We are so grateful for all of the outreach and support that we are receiving from so many of you. Please remember to keep Tyler in your prayers and thoughts as we will keep you in ours!
With much appreciation and gratitude,