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In Honor of Gavin

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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 because of the monster he is fighting.  Gavin has been on a clinical trial drug for over two years called Palbociclib, just recently FDA approved for breast cancer. He was the first child in the country to receive the drug and it has shown to stop the growth of his tumor. Because of its success, Pfizer has opened clinical trials for other solid tumors like Gavin's!  Gavin nicknamed his tumor Joe Bully when it continued to break the rules and threaten his life. 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 was finally under control with the new drug and we began to pursue a new surgical tool, Visualase.  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 mature 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 a brain 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 a total of four ablations over the past two years. We will repeat until the Bully has been defeated.  It is minimally 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 perfusion (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.  Soon, many more people will benefit from this life saving, amazing technology!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.  He is in Karate and loves it! He will be a fourth grader starting in September 2015.

Latest Journal Update

Hi its Gavin

Whats up everyone?  I changed my picture to an island and am pretending that I am on it in the hammock.  Someday I want to go to the Hawaiin islands.  I am feeling really good.  I have one more month of summer.  

Gavin 












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Comments

9 Comments

Kathy Molenaar
By Don & Kathy
Hi Gavin-what a beautiful and peaceful picture. So calming. Are you enjoying your summer-vacation time? I bet you are anxious to go back to school too. It is good to get back into a routine. How is karate going? Am proud to know you, you give everyone encouragement. Do you keep in touch with Gr. Grandma Elaine? She too is a very strong and courageous person. You must get that from her!! God bless you Gavin and your family. YOU ARE NEVER ALONE.
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Ann Berdahl
By Ann Berdahl
Hawaii sounds great, Gavin! I hope you are having a great summer! Have you read any good books l ately? I hope to see you at open house. Take care and see you later! You are the best.
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Pat McGee
By
Pierson's
I love the beach scene. Enjoy your time with the family. I have so loved to follow your life experience as long with my "you can't see me" buddy. All have been through a lot, but you are strong fighters.

Love & Peace always dear one
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donna bolles
By donna bolles
Hi Gavin, I love your photo. You are such a handsome boy. I hope you one day you will go to the Hawaiian Islands. My husband Tom and I went on a cruise and saw them. They are beautiful. My favorite one is Maui. The beaches on that island are amazing. The water is a special color blue, and the sand is so soft on your feet. I would go back if I could. It makes me smile to know you are doing well. Hang tough!!!
God bless you, Donna Bolles
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Michelle Bangert
By
Hi Gavin! So good to hear from you :) I'm so glad to hear that you're feeling good and having such a great summer! I would love to go to the Hawaiian islands too. What a beautiful and serene place to be. I can't wait to hear how the rest of your summer goes and how you like school when it starts and your new teacher. Samantha and Dylan are not excited to go to school. Dylan is going to be in the 11th grade and Samantha is going into 8th grade. Dylan is working at County Market in Andover (maybe you will run into him sometime there). He bought a truck and put really loud straight pipes on it. I think you would like how loud it is. :) Hope you have a great weekend with your family. Lots of hugs to you from me and my family.
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Melissa Durand
By Melissa
Hi Buddy! Glad to hear your summer is going so well!
Fun to see your update 👍😊
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Allen Johnson
By Allen
Dream Dream Gavin Dream and never give up dreamin
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randy weiss
By
Hey Gavin - happy traveling thoughts and dreams! Looking forward to seeing pictures of you one day actually in Hawaii - with an umbrella fruity drink and doing the hula!
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Deborah Scully
By Deborah Scully
Enjoy your summer Gavin. I am sooo glad you are feeling good. You are such an inspiration.
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