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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! 

Latest Journal Update

Update on Gavin's morning

Gavin woke up easily and not anxious.  He was very tired and slept most of the way to the hospital.  When we arrived we discussed sedation options and after talking with the anesthesiologist he said that even though precedex worked for Gavin for the sedated MRI, propofol puts him I'm a deeper sleep for surgery.  

We decided to give a large dose of versed with a few bumps once the IV was in.  It worked well and he was sleeping in ten seconds on propofol without flinching.  It was the best experience and the nurses were celebrating with me about how smooth it went.  

Dr. Petronio said he is going in from the back right and will do the biopsy first if possible.  I just got an update while typing this from Shannon in the OR that he's doing great, they have placed the fiber and are doing a scan.  Relief until the next call...

23 people hearted this



Robert Saumweber
By Robert Saumweber
Continuing our prayers Bob and Kate
Brian Owens
By Brian, Julie and Kaitlyn (and Oreo)
Glad the sedation went well. Praying for all of you!
Marian Neumann
By Marian Neumann
Prayers for a good outcome and peace for your family!!
Karen Beecher
By Karen Beecher
Praying for a great outcome! Praise God that the sedation went well!! Keeping you all in our thoughts & prayers today!! Both kiddos are wearing their camo for Gavin today, & I'll have my bracelet on shortly!!
2 people hearted this
Rebecca Reid
By Rebecca Reid
We are here! Megan and I said a special prayer at bedtime last night for all of you. At exactly 8:00am this morning she looked at me without looking at the clock and said, "mommy, is Gavin having his surgery now?" Then we held hands and prayed for all of you. We prayed for a smooth, easy sedation and many other things. Praise GOD!!!!! So glad the sedation went smooth! Cheering on the sideline for you! Hugs to you both Steve and Nicole as you wait!
1 person hearted this
Lisa Stuart
By Lisa Stuart
My prayers are with you all today!
1 person hearted this
Jim Maydelle Fennick
By Jim & Maydelle
Great news! We continue to pray for each of you.
1 person hearted this
Tammy T
By Tammy
Great news, prayers for a continued smooth experience and good results!
1 person hearted this
Jenn Evans
By Jenn Evans
Prayers coming your way! I am so glad it went "smooth."

Sending you a hug, Jenn
1 person hearted this