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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 because of the monster he is fighting.  Gavin has been on a clinical trial drug for over two years called Palbociclib, just recently FDA approved for breast cancer. He was the first child in the country to receive the drug and it has shown to stop the growth of his tumor. Because of its success, Pfizer has opened clinical trials for other solid tumors like Gavin's!  
Gavin nicknamed his tumor Joe Bully when it continued to break the rules and threaten his life. 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 was finally under control with the new drug and we began to pursue a new surgical tool, Visualase.  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 mature 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 minimally 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.  Soon, many more people will benefit from this life saving, amazing technology!

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.  He is in Karate and loving being a full time third grader.

Latest Journal Update

Visualase coming up

Gavin will be having Visualase again in May.  Ahhhh, we don't want to!  Of course we want to burn up the bully... But Gavin doesn't want pokes, scans, surgery, hospital stay (luckily short!), extra meds, recovery.  Granted, recovery is only a few days - which is crazy, but it is still not feeling well and missing school and karate.  I haven't heard from Neurosurgery about a date yet, so I will be in contact with them about the date, and if any pre-op scans are necessary.  Gavin has been tired these past few days, and more emotional at times.  Not sure what that's all about.  He is on day 14 of 21 with Palbociclib, so the tiredness can be explained from that.  I find him processing what his life has been for over three years now, as he matures, and sometimes I think he is just sick of it.  Totally get that - we are all so sick of Joe Bully.

I remember when this began and I thought treatment would take about 8 months... Then things got bad, yet still, our hope was maybe in a year Gavin will just go back to life without a brain tumor.  The years just keep coming and going.  It's hard.  We know Gavin is creating a treatment regimen for his type of brain tumor, and that trying to think of a timeline will just continue to crush us.  So we have abandoned wishing and hoping for one - which honestly then makes us feel as if this is Gavin's life forever.  Most days, our attitude is that he is here and is one of the lucky ones who so far, has survived such a horrible disease, when so many don't.  But sometimes we just feel the weight of it all, and wish it wasn't so.

Today Gavin had his second karate tournament with his brother Gage.  They both did great and were pretty excited that they were chosen to bring home the huge 2nd place team trophy for their Mega team event.  I am very proud of both of them.  They love karate and went four times this past week.  It continues to be something Gavin looks forward to and loves.  Even when he is on the verge of falling asleep after school, when I ask him if he wants to go to karate he perks right up.  We have kept what we tell his karate studio, to a minimum.  They don't know Gavin's history - just that he is going through some treatment.  I honestly do not even think most of the instructors know he has a brain tumor.  And I kind of like it that way.  They don't treat him differently, he has to do everything full out, no excuses.  He works hard and meets their expectations.  It's amazing what expectations do to performance, and thus, success.  I think this is why Gav loves it so much  - he likes the challenge!

Speaking of challenges - tomorrow, running for Team Kallie, Home Away Boston, Jessica Brovold is running the Boston Marathon!!  Kallie is a sweet little girl, who was diagnosed with a brain tumor nearly two years ago.  We met Kallie and Jessica about a year ago, even though they live in Sioux Falls.  Jessica's parents live like a couple of miles from my house, crazy!  Anyways, she is dedicating mile 11 to Gavin, and we are so proud of her!!!  She was not a runner, but a few months ago, accepted the challenge and has been training.  Please send her prayers and good thoughts as she accomplishes this huge goal :)

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1 Comment

Nikki Weinert
By Nikki Weinert
You don't know me. I found out about Gavin's fight by teaching in AH. I have been praying for Gavin and all of you since the beginning of his horrible diagnosis. I really respect all the time that you have put into reading research and seeking out all the latest technology and medicines to help him. I will continue to pray for Gavin each day and for all of you as well. I can't imagine how hard this is on all of you. I pray that in the near future all of you can put this behind you and move on. You amaze me! Prayers for now and forever!
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