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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 over a year 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.  It 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 had another visualase treatment in February 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. 

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! 

If you would like to donate in support of Gavin you can do so at Wells Fargo under the account "Gavin Pierson Donation Account".  Thank you for following Gav's journey.

Latest Journal Update

3 sleeps

Tonight Gavin and I talked about the big day and the bully.  He started out by saying he doesn't want to do surgery and starting tearing up.  It's heartbreaking to talk him into why he has to.  I started telling him and he stopped me saying "mom I know what you're going to say- the laser heats up and shrinks Joe Bully and the pills just stop the growth so I need surgery if I want him gone".  Yep buddy that's all I can say- and that I love you and will never leave you.  He so smart and grown up knowing all of this.  I knew I would need to give pep talks to my children as they grew up, but I never imagined it being a pep talk about having his 21st surgery :(.  No matter how far we are in this or how experiences we are I still get angry and sad.

One thing that cheered him up was reading his guestbook comments.  Michelle he mentions you often and randomly asks to go see you and Sam and Dylan.  He talks about how big they probably are now and how much fun they had.  He even remembered the neighbors dog, Daisy.  He was so little but has so many memories.  Kayla he was happy to hear from his ninja master!  He said he wants to come see you soon and continue ninja training!  Nurse Travis- if you're reading this, Gavin always remembers you and wishes you still worked in PICU but knows that you are " going to school to be a surgery nurse" (Gavs words).  Even though he doesn't want to do this- he is so lucky to have all of you reading this that care so much about him.  It brings me to tears thinking about everyone's support on this journey.  

I spoke with pre op today about Thursday.  I was able to let them know about how Precedex worked better than Propofol.  She wrote down that it works best to have Versed first and then IV followed by Precedex.  Let's hope it works as well as last time!  Gavin stopped blood thinners tonight and is also off Palbo so it was nice he only needed one med tonight.  Gavin's last day of school is tomorrow- he is so concerned that he will miss something.  Today he made me promise that I would get homework for him because he said "I don't want to be left behind".  Oh. My. Goodness- how cute is he?  We will see how much he actually wants to do but to think about that when going in for brain surgery- who is this kid? :)

If I don't get a chance to update again- please keep Gav in prayers and if you have a Gavin's hope or Gavin's army shirt please wear it Thursday!  Or if you have any camouflage that works too.  Thank you all so much for continuing to fight with us!

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Comments

22 Comments

Nicole Pierson
By Nicole Pierson
Thank you all for your comments - I will be reading them to Gav tonight! Colleen our address is 5821 Sunwood Drive NW Ramsey, MN 55303. He would love a card! Thank you :)
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Colleen Evenson
By Colleen Evenson
I do not know you, but was wondering if there is an address I can send a card to this brave little boy. If you want to post it that would be great
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donna bolles
By donna bolles
Praying for you Gavin that you will be back in school soon. Momma will get your homework, don't worry. You are a smart guy and will catch up in no time. God bless your sweet family. Donna Bolles > Madelyn and Avery's Very Proud Nana. Always Trusting, Believing, and Staying Forever Faithful/Focused on Christ.
caringbridge.org/visit/averyevans
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Lori Hansel
By Lori Hansel
Gavin you are one STRONG and INSPIRATIONAL little boy!! I know that I love your Mom's Posts and especially when she quotes you as you really have a fighter personality armed with good humor and sensitivity. You have come a long way and I am so proud of all the extra work you have done to get there. Nothing in Life is easy but you sure are showing that with the right support system and attitude it is possible. Hugs to you and your family and JOE BULLY YOU ARE GOING DOWN!!! Prayers and a god speed recovery be yours!!<3
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Robert Saumweber
By Robert Saumweber
We just put your surgery date on our calendar to remember to pray for you, your medical team,and your family on Thursday. Godspeed! Bob and Kate
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Tammy T
By Tammy
Lots of love and prayers, Gavin, as you continue your journey to freedom from Joe Bully. The hardest journeys often are the ones with the greatest rewards. Hang in there, kiddo!!
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Pat McGee
By
Nicky - Sorry if I spelled your name wrong but it is hard as the tears fall reading about this strong young man & your family
I will make sure that the incense is burning for that day & ask some close others to please say a prayer for them for me
He is a strong, an awesome fighter, making the ways for others!!!!

Love & Peace always dear dear ones
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Patty Lamolli
By Patty Lamolli
We will be praying....soldier on Gavin!
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Dawn  Jonas
By Dawn Jonas
Hi Gavin! You are a BRAVE ninja warrior and a bully cannot stand up against a ninja...so go in there and kick Joe Bully's butt!!! God is on your side cheering you on and so are we! :)
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Marian Neumann
By Marian Neumann
Gavin--You are in our prayers and hope this surgery will be your last. Hopefully Joe Bully will be gone forever. You are a brave little boy and I know you can endure this one more time.
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