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Gavin’s Story

Welcome to Gavin's caringbridge site!  Gavin was diagnosed with a rare brain tumor in April 2012 when he was almost 6 years old.  His treatment plan has been changed multiple times and he has been on a clinical trial drug for almost two years called Palbociclib. He is the only child in the country on it and it has shown to stop the growth of his tumor. Gavin nicknamed his tumor Joe Bully. Gavin's tumor was large and after 5 craniotomies, chemo, steroids and no real treatment - he was given a grim prognosis in January 2013. 

We refused to believe he had gone through so much to just give up and fought hard to get the clinical trial drug from Pfizer.  His tumor is finally under control with the new drug, and he has minor side effects thus far.  After stopping the growth, we now had time to find a better way to treat it.  Joe Bully is in the pineal region of his brain and is called a growing teratoma.  It is very difficult to remove traditionally because of it's location and consistency. 

On October 29 2013, Gavin was the first person in the upper midwest to have a Visualase laser procedure to ablate his tumor.  This fairly new technology in neurosurgery, uses heat from light energy to kill the tumor.  Gavin is also the first in the country to have a mature teratoma treated this way. Gavin has had two more ablations in February and October 2014 and we will repeat until the Bully has been defeated.  It is minimially invasive and has allowed Gavin to continue his life without any neurological consequences. 

It works very well on his tumor because the tumor is encapsulated (in one place) and has low blood profusion (small amount of blood supply) which helps the heat spread through the tumor.  In July - Medtronic actually bought out the company that makes the laser for 105 million!!  This shows how promising it is.  

Gavin has experienced many hospital stays, unexpected serious situations and deficits that he has mostly overcome.  He does not allow this bully to define his life and is more like himself every day!  He is full of life and humor and loves making others smile.  This journey has been long but we have hope for some day without Joe Bully!  Life is not without pain, and Gavin shows that he can still have joy.


Latest Journal Update

Home

Gavin is home and loving all of the comforts of it.  On our way home Gavin requested Pizza Flame (mom and dad were not complaining) so we stopped for lunch.  It is near his great grandparents home so we stopped for a visit with Grandma GG and Grandpa Gary.  Thank you all so much for your kind words and concern for Gavin this past week.  It means a lot to our family, that after years of this we still have so many following and praying.  

This morning Gavin read cards from the sweet kids in his class.  They were so cute and made him smile :)  What compassion 8 year olds can have... Amazing.

Gavin can resume normal activity and diet with extra hydration.  He will return to school Monday and I am glad it is a short 2 day week because of Thanksgiving.  I hope to have a wonderful holiday and am thankful for so much.  Life is precious.  We do not take it for granted.  Gavin said to me Friday morning at the hospital

"Mom - the fun is in the journey, and the journey moves forth".  

Wow.  Quite the thinker he is.  And he is right on.  Although I am fairly certain he picked this up from a movie - he used it in context and understands its meaning.  Life will go on, and it doesn't stop moving forward no matter what the circumstances are.  Joy along the way is the only way to make that life worth something and meaningful.  




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Comments

5 Comments

lori lattrez
By Laura lattrez
God is great and I know he has big plans for Gavin and Gavin's army. We all on this journey with your family. This Thanksgiving will make sure your family will be on top of our prayer list. Hugs.....
barb arends
By barb arends
AMEN sister!
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jamie walters
By Jamie& Miah
So happy to hear your feeling better . Your such a strong and inspiring little guy. Miah and I love you and hope to see you and your family over the holidays.
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Kathy Molenaar
By Don & Kathy Molenaar
so happy for everyone that Gavin is home and life can resume again. We wish you all a very Happy Thanksgiving-God bless you even more on this day.
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Celine Hofstede
By Celine, Jeff, Celeste and Noah Hofstede
glad to hear such good news, we can't imagine how scary it must have been. Gavin is an inspiration for all of us, you are an inspiration to me, you never give up, you are amazing.
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