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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 almost two years 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.  Joe Bully 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 has had two more ablations in February and October 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.  In July - Medtronic actually bought out the company that makes the laser for 105 million!!  This shows how promising it is.  

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!  Life is not without pain, and Gavin shows that he can still have joy.

Latest Journal Update

MRI today and life

The MRI results aren't completely in... The radiologist and Dr. P need some time to view all of the images. Dr. P said everything looks great. Everything is better than his previous scan- smaller tumor, ablated tissue showing up inactive and shunt is doing it's job. We will be having a meeting with Dr. Schultz and Dr. P within the next few weeks to discuss our plan moving forward. When would Gavin stop Palbo, how often to come in for MRI and/or laser procedures. Dr. P said he feels we could go down to coming in twice per year (every 6 months rather than every 3). Gav showed him some karate moves . Labs look great too still waiting on a few of them. 

Gavin was hilarious after getting some Versed,  a happy med that calms him down and helps with sedation.  He was seeing stars, thinking he was in a limo, telling the nurse she was a super secret spy... We were just agreeing and laughing.  Today went really well.  Only one poke for the IV, labs drawn easily, great sedation procedure and wake up.  I am so relieved that the day went so smoothly.  

I did not take a picture of the MRI to post because honestly I forgot - but also I think if I posted a pic it would be misleading.  Every time I am ready to view new pictures it's like I expect to see a tiny little spot - even though I know better.  It looks like a mangled up ball of wax... with bubbles and ugly textures from all of the ablations.  It is smaller every time but is still there.  Being it is a 3 dimensional object, viewing it in 2 D does not do justice to the damage that has been done on it.  Dr. P showed me specific parts that are not an issue/dead, one part that is fluid like, and one part that is possibly still live tissue.  It looks like a beat up Bully.

For years now I have hoped there would be one day when I would know for sure that we are done worrying about this tumor.  It has been stable and slowly but surely we are treating it - but it's there and we just have to live with that.  Realizing that Gavin can still be a kid, enjoy life and grow/learn all with a brain tumor changed our perspective.  Yes we still dream of that day we know we are done.  But no longer are we holding our breath.  We are living with a brain tumor - not waiting around for it to decide our life.  It's a change in perspective.  We all have a "Joe Bully" in our lives - something that we wish we could live without worrying about - but we still have to LIVE.  

We are planning a pretty awesome surprise for the kiddos coming up at the beginning of March.  We are still finalizing details.  In 2013, Gavin had a Make-A-Wish trip and so badly wanted to go on a cruise.  Due to his health, we couldn't go and had a great time in FL, with local hospitals and emergency plans in tow.  It was wonderful - but we were still constantly worrying about him.  We are now trying to make this dream come true and have the green light from his doctors!  Praying it all works out for us to do so. We told the kids we can't go on the cruise and that instead we are going to fly to Wisconsin Dells.  Our plan is to act like we got on the wrong plane to FL and then just tell them we will hang out there instead for 6 days - and then hop onto the cruise.  I am giddy like a child thinking about how excited they will all be.  So if you hear Gav talking about flying to WI dells, that's why ;)

I will post the final results and plan once we have it.  Thank you for all of your prayers and good thoughts <3

44 people hearted this



Sharon Gebell
By Sharon Gebell
What wonderful news PTL!!!
2 people hearted this
Carol Covato
By Carol Covato
Happy things are looking so good! I feel giddy about your upcoming trip and I'm not even going!!
1 person hearted this