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Tyler’s Story

This site is in honor of our brave little fighter, Tyler, who passed away on October 30, 2008, at the age of 7, after a three and a half year fight with a brainstem tumor. We love you Ty, forever and always.

Watch Ty on you tube!search Hibinger Brain Tumor

Tyler was born on September 9,2001. After a ten day stay in the NICU for treatment of Group B Strep Ty was able to come home.He was a pretty healthy little guy until 2004. In late 2004, Tyler slowly started showing symptoms that were so vague and came and left so quickly we just chalked it up to his being 3 years old, and 3 year olds can be quite challenging most of the time. Ty's symptoms varied and started out with him just constantly rubbing his eyes, which we thought might be allergies. He stopped that, and then I noticed that he was so much more irritable than he usually was, but I remember Nate being the same way when he was 3.Soon his mouth started to droop, but it was very subtle and couldn't be noticed most of the time. However when his left eye started to droop as well, we knew something was going on. He was also suffering from headaches. They started out mild, but by the time of diagnoses he was having them often throughout the day and was also vomiting 3-4 mornings a week. He was misdiagnosed as having Bell's Palsy and we had to push for him to get a CAT scan. In June of 2005 we were told he had a tumor on his brainstem. Ty had about 80% of it resected the next week. He then went through a 52 week protocol of Carboplatin/Vincristine. Ty finished that protocol in October2006. He was symtpm free until April of 07. We started on Vinblasitne but only made it through about 6 weeks before the tumor grew some more. We stopped the Vinblastine, and after surgery to relieve some of Ty's symptoms,he was started on Vincristine. The tumor did not change on the Vincristine, but Ty's body could not handle it. He lost all reflexes and became quite off balance.Currently we are at the beginning of 6 weeks of radiation therapy.Ty is doing well. He is a very brave and patient little boy. His big brother Nate has also been through alot with all of this happening, and we are very proud of both of them! Nate and Ty also have a new baby sister, Isabella, who was born in October(2006). Although doctor's are optimistic, they cannot give us a direct answer when we ask about Tyler's long-term prognosis. It is very frustrating to have a child with such a serious illness and have so LITTLE information out there to work with! We will keep up the journal whenever we have any updates. Thank you all for keeping the family in your prayers:-)

Latest Journal Update

And It Hits You

Not a day goes by that I don't think about Ty, or look at his picture and smile, or just plain feel him with me. I always feel him with me. I always miss that physical presence that I was able to touch and hug and laugh with. I'm always aware of the absence.
That being said, most of the time, I can feel Ty and be comforted by that, because I know he is still here. I can remember Ty and smile. I can talk about Ty or think about Ty and become filled with love, warmth, pride. Of course, there's always that hint of sadness that lines every bittersweet thought, but it is usually love and warmth and a peace of sorts that I feel when I am remembering Ty. Sometimes, though, the harsh reality of Ty's death comes searing through my brain, and shatters my heart. You never know when those 'waves of grief', or what I refer to as 'harsh reality' will hit.
In the early days, as time started to tick again and I stopped imagining and wishing for my own untimely death every waking moment, these smacks of reality would hit more often. Always unexpected, but more often. I remember being at the grocery store shortly after Ty's death, and I walked down the aisle with the Chef Boy R Dee that was a favorite of Ty's (thank you, Decadron..) towards the end. Suddenly, I couldn't breath. I wanted out of that store. I missed my boy. I wanted to buy that Chef Boy R Dee and bring it home and warm it up for him. I wanted to simultaneously throw every single stupid can of it on the ground and scream, because it wasn't fair that I was the one who lost my son. That I had to be harassed by these overwhelming memories that filled me with despair and hurt and sadness and just plain...grief.
Time went on, and the pain becomes less. It becomes tolerable. And eventually, for me, the constant pain was replaced with a peace in the realization that Ty was not gone, he was very much still 'here', just in a different form. I can live with this fact, most days.
But sometimes, those slaps of icy harsh reality still hit, and they still hit at the most unpredictable times. 
Two days ago I was at work when a customer-a grown man of probably around 20 or 30 stated his name. It was, as I'm sure you guessed-Tyler. All of a sudden I couldn't stop looking at this man. I couldn't stop saying his name over and over in my head. I started thinking about MY Tyler. About how he never got the chance to grow up, or drive a car, or go on a date, or even graduate from college and choose a career. THIS Tyler was living a life that MY Tyler was robbed of living. And it made me sad. Very sad. And I can imagine that this man may have thought it strange that I was looking at him and what probably seemed, to an outsider, to be through him. I was so kind to this man, and I couldn't help but smile, because I would want my Tyler to be treated that way, had he had a chance to grow up like this Tyler did. I had to acknowledge of course, that I was feeling this way, which is what made me so sad--acknowledging the reality that my Ty is gone from this physical realm. Acknowledging that I will never again get to hug my Ty on this Earth. Acknowledging that I was robbed, as his mother, from witnessing what kind of man he would have turned out to be, which I can tell you without doubt would have been one amazing human being. Acknowledging that I will never get to go to Ty's high school or college graduation, attend his wedding and dance with him, kiss his babies on their little heads, or any of the other things that this other Tyler's mom has had the blessing to be witness to. I hope she appreciates her Tyler.
After acknowledging all of those sad and ugly feelings, and holding back tears, I quickly changed my thoughts and re-focused on work. 
The point of this entry being....five years later, it can still hit you out of nowhere. It happens less, but it will continue to happen. And I still miss my guy. I always will.