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Justin’s Story

Thank you for supporting us as our 13 year old son was diagnosed with a Glioblastoma Brain Tumor!  After a long and hard fought battle with cancer, my young super hero Justin passed away on August 07, 2014... He is one that will be missed by many!!!

Latest Journal Update

Happy Easter Buddy

Good Morning Justin,

It’s early Easter Morning and its snowing! Right now the temperature may be a little to chilly for a outside Easter egg hunt but still may be warm enough for the kids to get dressed up in their new Easter going to church cloths.  It’s definitely not as warm as it was last year.  Remember, we were all sitting on the back deck when Bill and Melissa came over to visit. Everyone commented on the aviator sunglasses you were wearing and wished we had a pair. Little did we know this would be our last Easter and major holiday all of would celebrate together at home…

The Easter bunny didn’t hide Easter eggs this year but did bring Jackie a basket. My heart is still not into celebrating the holidays.  Mom did however buy our traditional Honey Baked ham for Easter. She told me you would want us to keep this tradition going.  We are taking it over to Aunt Pam’s and having lunch with mom side of the family. Man, you’re missing out!! I know how you love Honey baked ham. If I had to rank your favorite foods, HB ham would top the list.  It will bring a tear every time I sneak to the frig and eat a piece of left over ham without you.   I sure hope we bring home the leftovers …

Last week there were several cancer shows on the TV.  The news show 60 minutes did a segment on Glioblastoma tumors. Duke University is conducting studies by injecting GBM with the polio virus in an effort to restart the immune system. Follow me here buddy; when your tumor was discover, the first step was to try and remove all of it surgically. Unfortunately, the surgeon was only able to get about 45% of it. What tumor was left developed a camouflage shield over it to hide from your immune system. If your immune system can’t find the tumor it doesn’t attack it thus allowing it to spread. By injecting the tumor with a very small amount of a modified polio virus, the immune system recognizes the polio infection and works to destroy it. Since the virus is inside the tumor, the tumor is destroyed as well...  What is a little dis hearting about this study is Duke performed the human study on a twenty year old woman diagnosed before you were. The other thing that really hurts us, is I called Duke and explained our situation and they told me you were too young for the trial, (at the time) it was not reoccurrence and currently not active. Now, fast forward 8 months, you’re gone, she is a live and doing pretty well…  I wish you could have been the featured success story. At least this story reported on a possible treatment to beat this and other cancers. You know we all did the best we could with the knowledge and information we had....Any of us would have done anything to save you.

Well I better let you go… I would think Easter is a pretty big holiday up there. If I remember correctly; on the third day Jesus rose from the dead and went to heaven to be with his Father… I can only imagine how happy God was when Jesus came walking through those pearly gates. I’ll bet you it’s one hell of a party…well maybe heck, not hell !!!! LOL. Have fun and don’t be such a stranger. Remember, Tiger Opening Day is tomorrow so don't forget to Bless the Boys!!!

Love and Miss You Always,

Dad, Mom & Jackie

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Comments

3 Comments

Kim Vaughn
By Kim Vaughn
Easter morning was crazy with the snow and chilly temps. Brr! I was in charge of planning our egg hunt at church...and was secretly relieved to have it moved indoors this year. My planned out Easter outfit would not have worked out so well with that weather. :) (The girls will totally understand...)

I'm glad the Easter bunny made a stop for Jackie....and the family dinner plans sound like a nice way to spend the day. I'm sure it was emotional, thinking back to last year - but so grateful you have such sweet memories together to look back on. (I only wish there could have been so many more!) I know you'd much rather be fighting with Justin over the ham leftovers than having it all to yourself...going to get a sandwich and discovering "someone" ate all the ham suddenly seems like a good problem to have.

It really is difficult with these studies and their criteria for acceptance and compassionate use...you guys truly did do all that you could. I'm sorry you couldn't try out more of the options you had wanted (I'm sorry you had to even be in the position of needing to seek out options). It's truly frustrating to know things are in the works and have your hands tied without the benefit of opportunity. Justin had to always know the love you have for him and that you'd do anything for him. I think that much was ALWAYS clear (and still is).

LOL on the "hell of a party"....you sure know how to make us laugh! :) I bet Justin was cheering the Tigers to victory, yesterday! Remembering Justin and your family, and hoping your Easter went. Sending love and prayers to you all!
Sheila Jones
By Sheila Jones 'Always Sammy's Grammie'
Wishing you the best EASTER as possible!! I like to think there's one giant EASTER egg hunt going on!!!💚
Faye Glick
By Faye
I am so sorry to hear you called Duke & they said that Justin was too young for the trial. That is truly hard to understand given the prognosis for glioblastoma & it saddens the heart. The angels probably cooked up a honey baked ham just for Justin this Easter...
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