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My 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.


Nicole Pierson posted a new journal entry, "An Old Soul".

Gavin had a great week at camp!  He dissected a shark, launched rockets, made impressions,fingerprints and goo :)  The theme for camp was to "be a breath of life" to ... Read more

Teresa signed Gavin's Guestbook.

Dear Gavin and Family, You do not know me, but I have followed your story on Caring Bridge now for quite a while.  I am amazed everyday by the strength you show as a ... Read more

Teresa Brandsrud signed Gavin's Guestbook.

HI,  you know I really don't care for this new caring bridge format.  I was on my phone and didn't mean to leave a blank comment, so I tried to delete the comment and ... Read more

Nicole Pierson posted a new journal entry, "Appointments".

First of all, what a great day Gavin had today.  He swam for hours and can now swim under water across the pool without coming up - he was so proud that he could do it ... Read more

Michelle Bangert signed Gavin's Guestbook.

Wow, fantastic stuff!  Gavin is so lucky to have 2 great parents responsible in supporting him and obtaining all these innovative tools that will make him 100% ... Read more

Rebecca Reid signed Gavin's Guestbook.

Praying that God will provide an amazing way to fund this new therapy, it sounds so purposeful and hopeful.  I can only imagine how busy you are...all the appts and ... Read more

Nicole Pierson posted a new journal entry, "Neurofeedback and update".

Gavin continued to rock this summer.  He is on a break from Palbo and starts a new cycle Tuesday.  No complaints and feeling great!  It feels so good to be able to give ... Read more

Rebecca Reid signed Gavin's Guestbook.

Gav, you are ROCKING those specs!  I love your look in glasses...sooooo charming!  They match your witty, smart charm perfectly!  LOVE THEM!!!  Happy summer outings ... Read more

Michelle Bangert signed Gavin's Guestbook.

Glad to hear you are all soooo busy and just enjoying life together!  It makes my heart shine and brings happy tears to my eyes!  Always thinking of you all and sending ... Read more

Nicole Pierson added a new photo.

Nicole Pierson added a new photo.

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