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, "Sedation options & vision update".

I talked to neurosurgery today about the details of the scans and about other sedation options there may be for Gavin.  They are going to look into it and get back to ... Read more

Colleen Muscato Zarach signed Gavin's Guestbook.

Gavin,  You are an inspiration to us all and I am sending warm wishes for healing, many hugs and know that you are going to be a star in school this year.  You don't ... Read more

Michelle Bangert signed Gavin's Guestbook.

For what it's worth, I have not forgotten.  I see that the guestbook entries have dwindled, however, I continue to think about Gavin each and every day.  I hold him ... Read more

Rebecca Reid signed Gavin's Guestbook.

I just love you guys and we continue to pray that you can feel some peace and comfort.  I don't blame you a bit, this has been so, so, so much.  You Nicole, are the ... Read more

Nicole Pierson added a new photo.

Nicole Pierson added a new photo.

Nicole Pierson posted a new journal entry, "Gavin's scans coming up".

I spoke with neurosurgery today about Gavin's scans at the end of the month.  September 29th Gavin will go in for the IV placement and sedation for the 3 tier MRI.  The ... Read more

barb arends signed Gavin's Guestbook.

Dear Piersons,thank you for the beautiful post.  So thankful that Gavin is cruising along so well.  We will keep you and Gage in our prayers.  It's always something ... Read more

Michelle Bangert signed Gavin's Guestbook.

Glad to hear things are going well with school for Gavin.  We'll also be praying for Gage.  Blessings to all of you. Read more

Nicole Pierson posted a new journal entry, "School & upcoming appts".

Gavin will start week 2 of school tomorrow.  He likes 3rd grade so far and attended all week without needing a rest or nap.  Last year, he was very tired in the ... Read more

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

Show more recent activity