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, "Update on G-man".

Gavin has been doing well - other than being a little tired as he finishes this cycle of Palbo.  He is currently on day 16 of 21.  Today he had his last summer OT and ... Read more

Nicole Pierson posted a new journal entry, "Appts today".

Gavin met with Dr. Schultz and Dr. Petronio today.  He wrote them each a letter and was very excited to give it to them, having them read it right away.  Both letters ... Read more

barb arends signed Gavin's Guestbook.

Dear Nikki, Thank you so much for posting the pictures on this site for people like me who have not yet figured out Facebook!  The pictures are  so beautiful.  Such joy ... Read more

Michelle Bangert signed Gavin's Guestbook.

Wow!  It gives me goosebumps just knowing the meaning of the orb and it's surrounding all of you.    God and his angels are definitely with you all!  Thanks so much ... Read more

Nicole Pierson posted a new journal entry, "Beautiful pictures to share".

Background: We had family photos done in late June.  The night of the shoot, the photographer sent a picture of us standing in a circle praying, because she thought it ... Read more

Nicole Pierson added a new photo.

Nicole Pierson added a new photo.

Michelle Bangert signed Gavin's Guestbook.

Oh happy day!  What wonderful results.  I'm sorry Gavin had to endure this, but he came through just like he always does!  He's so amazing :) Read more

Mary Kay Miller signed Gavin's Guestbook.

So happy for Gavin and all of you! God continues to answer prayers. Get some rest! Read more

Nicole Pierson posted a new journal entry, "Long day".

This day was hard.  This morning I gave Gavin Ativan to reduce anxiety before we left to the hospital.  When the nurse tried looking at his arm and putting Emla numbing ... Read more

Show more recent activity