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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 two more ablations in February and October 2014 and 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 loving being a full time third grader.


Latest Journal Update

Happy 9th birthday Gavin :)

Gavin stayed home from school today, as he still is on a lot of meds and still not 100%. He rested a lot, ate cake for his 9th birthday, drank a yummy oreo shake from auntie Katie, had visitors, and opened a few presents. We will have a family party for him next weekend so today was low key. I cannot believe he is nine!! I am so thankful we have been given treatments that allow birthdays and give us a hope of no more Joe Bully. When Gav was just 5, he was diagnosed and I never would have thought we would be here over three years later still fighting this beast. We are winning though, and after everything Gavin have been through that is a victory in itself.

Gavin will stay home again tomorrow. He may be able to go to school Thursday and Friday. Once he can make it the whole day without needing pain meds besides tylenol. Today, he only had tylenol until this evening when his neck and head hurt a little more. Valium has helped him relax and be pain free. Steroids. Oh do I remember steroids. He is only on them a few more days. The emotions, the boldness, the up and down, and the appetite - yuck! When he is crying or whining or being sassy I remind him, it's the steroids. 

Hoping for a good night of rest and continued recovery tonight <3

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Comments

11 Comments

Robert Saumweber
By Robert and Catherine Saumweber
I just sang the Happy Birthday song for you, Gavin. Continuing to pray for all !!
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2 people hearted this
Marie Dehn
By Marie Dehn
Happy 9th Birthday, Gavin. I don't know you, but I have praying for you. Bev is my 1st cousin, or rather Art was. So we must be related. You sure are an inspiration. Keep on trucking. I pray you will feel better to enjoy your birthday.
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Pat McGee
By
Gavin
I sent you a birthday wish to mom's email. Have her open it for you & ENJOY!!!!!
I am proud to say that I am a part of your Army-glad to have your back!!
Have a good one my friends!!!!

Love & Peace always
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Michelle Bangert
By Michelle Bangert
Happy Birthday, Gavin!!!! Wow, nine years old. I remember when you were two. You sure are growing up fast. You are the bravest and most compassionate young man I've ever had the pleasure of knowing. I hope you feel better very soon and can go back to school. Just think, school is almost out for summer vacation and you and your family can enjoy the summer and make a ton of memories. Love and hugs to you, Gavin!
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randy weiss
By randy weiss
Happy Gavin's birthday to ALL THE PIERSON'S....Enjoy all the celebrations in his honor and then celebrate some more-:)
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Miss Ginny Shunkwiler
By Pastor Ginny
Happy Birthday, Gavin! We look forward to celebrating the MANY more years of birthdays you will have the honor to enjoy! Keep up the good fight...you are winning!
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Corey Kretsinger
By Corey Kretsinger
Happy birthday, buddy! I've never met you, but I've been pulling for you all along. I hope you have the coolest birthday EVER!!!!
I'm so happy to see you continuing to fight this bully. You will win. I have no doubt. Keep fighting the good fight! <3
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Jim Maydelle Fennick
By
Happy Birthday Gavin and many more! Wow you are one amazing kid who has taught us all so much about keeping a positive attitude and a great sense of humor! Yea for you. Love, Maydelle and Jim Fennick
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Cathy Ostroski
By Cathy Ostroski. C.O.L.E.'s Prayer Team. www.colesfoundation.org
Happy Birthday! I'm praying that you feel much better and can enjoy your party.
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Dana Lopez
By Dana Lopez
Happy 9th Birthday Gavin!!
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2 people hearted this