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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.

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Nicole Pierson posted a new journal entry, "PET scan/Bone scan".

Gavin did great today at the PET scan.  He had to drink a lot of water when he woke up until the scan.  When we got there, the IV was still working perfectly.  They ... Read more

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

Long but successful day.  Gavin was not anxious at all about going today.  He actually kept looking at the clock telling me how much time we had before we had to leave. ... Read more

Leigh Hohn signed Gavin's Guestbook.

Saw your family's picture board when I was in the caribou in Ramsey today. 😊 hope everything goes great with the PET scan next week!! Read more

Nicole Pierson posted a new journal entry, "The plan".

Yesterday and today I have been in conversation with both St. Paul Childrens Radiology as well as St. Paul Radiology, which is not in Childrens but a building close by. ... Read more

Heidi Droegemueller, Vice President of Development, CaringBridge signed Gavin's Guestbook.

In honor of Gavin's future! Thank you, Nikki, for sharing your family's story with all of us at CaringBridge. Read more

Nicole Pierson posted a new journal entry, "Gavin's appts yesterday".

Gavin had 3 appts yesterday.  He did a great job and luckily did not need any pokes.  First we saw Hematology about Gavin's history with clotting and the medication he ... Read more

Michelle Bangert signed Gavin's Guestbook.

Thank you for sharing your personal journal entry.  It's ironic that you wrote about this because on Friday, Samantha and I were running errands and out of the blue she ... Read more

Nicole Pierson posted a new journal entry, "Mr. Independent".

Let me preface this journal entry with a personal journal of mine.  It depicts how life was for Gavin while recovering from invasive brain surgeries.  It is how his ... Read more

barb arends signed Gavin's Guestbook.

Dear Pierson family,I remember seeing Gavin at Gillette in February and things looked so bleak.  His recovery has been miraculous.  I'm so sorry that Gavin still has to ... Read more

Colleen Muscato Zarach and Steven Zarach signed Gavin's Guestbook.

To Gavin, super speller!  Keep up the good work!   Read more

Nicole Pierson posted a new journal entry, "Visualase coming up & update".

Gavin has those PET and special MRI scans coming up at the end of the month.  We are working on getting Visualase scheduled.  Dr. P and I discussed October 13th or 14th, ... Read more

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