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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

Home!

Gavin was in the comforts of home less than 24 hours post-op.  This is AMAZING!  We are so thankful for this laser that affects him minimally while making huge progress against the Bully.  Gavin is the boy he was before surgery, right after - without therapy or weeks/months of recovery.  In the following days he will likely feel flu like symptoms as his body processes dead Joe Bully tissue.  He already has rosy cheeks, like I remember from the other 2 laser surgeries.  We have tylenol for aches, general ill feeling and minor pain as well as Oxycodone if he has any muscle pain from the incision site.

Because they also did a biopsy, the incision is a little bigger than the other 2, which were the size of the end of a pen.  This one is a couple of cm.  Still tiny compared to a craniotomy scars.  He cannot soak it for 3 weeks, and has to only do light activity.  No wrestling for a few weeks with his brother ;)  Right now he is on the couch enjoying being home!  I had to keep reminding myself he just had brain surgery on our way home and even now that we are home.  In the car, he was just talking with us like nothing and at home he's walking all around even though I keep telling him to take it easy and let me help him.

We will follow up with neurosurgery to look at the incision and check on how he is doing in 2-3 weeks.  We likely won't need a scan for about 3 months.  Dr. P said this was the most successful laser procedure thus far in terms of getting to a lot of Joe Bully and reaching hard to reach areas.  For the next 3 months, we will just keep Gavin growing and thriving in all areas of life until we look at how much more down this Bully is.  At that time we will plan what's next.  I keep saying this to everyone I talk to, and will say again - I am so thankful everything went so perfectly!!

This weekend will be low key, we plan on watching movies, sitting on the deck and enjoying the nice fall weather, and decorating/carving pumpkins.  I may do a little baking which I am sure Gavin will appreciate being he is on steroids for a couple of days!  Luckily he will only be on them for 5 days so he will not experience all of the affects he has in the past.  Gav will start blood thinners again tomorrow and will restart Palbo once finished with the steroids.  Praying that he gets enough rest this weekend, and feels good enough to start school early next week.





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Comments

4 Comments

Deborah Kourgelis
By Deb Kourgelis
Absolutely fantastic!!! Thank God for this laser procedure.
donna bolles
By donna bolles
I am so happy to hear that you are home. YAHOO! Praising and thanking God for the success of this surgery for Gavin. It is truly amazing!!! Enjoy the beautiful weekend! Blessing's, Donna Bolles > Madelyn and Avery's Very Proud Nana. Always Trusting, Believing, and Staying Forever Faithful to God. With HOPE for a cure for all childhood cancer.
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randy weiss
By
Amazing, Awesome, Terrific, Incredible etc. Happy being home, "relaxing", and enjoying each other weekend wishes.
Jennifer & James Argeros
By Jennifer & James Argeros
So glad to hear the good news! Thank goodness for the laser, and the surgeon who has the skill to use it!