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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 a brain 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 a total of four ablations over the past two years. 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 perfusion (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 loves it! He will be a fourth grader starting in September 2015.

Latest Journal Update

MRI and Neurosurgery/Oncology

Gavin did great today.  He is getting older since this all began, which of course I knew.  But he is more mature and handles things in a different manner now.  He is not such a little boy anymore. Don't even get me started on that, because my kids are growing up entirely too fast.  Gavin did not get any medicine to calm nerves, or be put to sleep for the hour scan.  The sweet nurses tried his left arm twice but could not get his blood to come out of his tricky veins.  They used the vein finder and it looked good but nothing...  The third poke on the right arm worked well.  Labs were done and an IV in place for contrast.

In the MRI, Gavin watched a movie.  He had to rub his eyes a couple of times, but waited for pictures to finish before doing so.  His shunt hurt at one point, so we adjusted.  He ditched the goggles 2/3 the way through and just listened because his eyes were too itchy and burning.  He did what he had to do, and sat as still as possible.  I was very proud of him.  We avoided sedation.  Afterwards, the IV came out and we grabbed a breakfast sandwich quickly before making our way upstairs for his appointments.  

Today something amazing happened.  Together, Gavin's team and I imagined the end of this long road.  We looked at the bully.  Without officially getting the radiologist report, Dr. P explained that the tumor looks much more homogeneous which is good, and I could see how much smaller it was.  Dr. Petronio explained that Visualase has worked well to get at the bully from 4 different angles, but that another laser (called Neuroblate) is available to Childrens for a few months and he would like to use it.  I guess it's slightly different with a side firing mechanism that goes over more tissue surface rather than through it.  

What this would do is better coagulate the tumor tissue and make it easier for..... get ready..... years in progress..... SUCKING THE REST OF THE BULLY OUT.  Like using a surgical vacuum and sucking the rest of the bully out.  Meaning no tumor, no dead tissue, no bully in my son's brain!  I had him repeat, and then I repeated this.  Because I couldn't believe we were truly seeing the light at the end of the tunnel.  I somehow didn't cry, but I paused, in awe of Dr. P and Dr. S, for all they have done to save Gavin.  We are going to roll him up in a ball and essentially suck his lifeless body out of Gavin's brain, and I cannot really fathom it.

I can't imagine looking at a picture of Gavin's brain without a bully in the middle taking up residence.  Pushing important structures out of the way.  Taking some of Gavin with every push.  I can't imagine a life without brain surgery.  But today, while sitting in a little office, I felt it.  I felt that this will happen, and Gavin will live tumor free.  We still need to be patient, and schedule this next laser surgery and finally the take down of the bully.  But we have a plan to finally defeat.

Was that amazing enough to read?  Well I have more.  Pending final decision about the fact that there has been no growth on MRI (radiologist needs to make final decision), Gavin may be done with oral chemo forever!!  The Palbociclib, that saved his life and stopped Joe Bully may not be needed anymore.... ever.  There is no reason to believe that Gavin needs it anymore.  Another amazing feeling washed over me as I thought about how hard we had to fight for that medicine, how Gavin wouldn't be here without it.  And now we don't need it?!  

As you can imagine I left that appointment on top of the world.  I turned the corners of the parking ramp, and remembered doing so just two years ago when we had little hope.  I could recall the feeling that the world was spinning uncontrollably around me as I replayed what I had just heard - that Gavin has a few months to live.  I remember so clearly looking at Gavin in the rear view mirror and not being able to stop the tears from flowing, and feeling the weight of our reality.  We were losing him.  The fight has been long, but today was a victory.  Today we planned the beginning to the end of Joe Bully.  

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Comments

26 Comments

Cheryl Smith
By Cheryl Smith
Words cannot describe how incredibly happy I am for Gavin and all of his loving family. The news you received and road map today are priceless. Bask in every glorious second as you repeat today's results!!!
He IS good!!!!!
xoxo!
Cheryl
Carol Covato
By carol covato
Praise God!!! Your family must be "going thru the roof" happy!!!!
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Kathy Molenaar
By Don & Kathy
We agree with the other comments- Praise God--God is good. So happy for you and your family. Especially Gavin. What a soldier! Strong! With God's continued help, you all will come shining through this trial. PRAISE GOD!
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Michelle Bangert
By Michelle Bangert
AWESOME! I could feel your elation with every word I read. It was like a page turning novel :) I've got tears in my eyes and a lump in my throat I'm so happy!!! I, too, often reflect on the past couple of years you've all had to endure and to read this is just so fantastic! Praise God!!!!!!!!!
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David Salchow
By David Salchow
Great job Gavin, family and doctors! Here's hoping the tumor can be removed completely and life without Joe Bully can begin!
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1 person hearted this
Dawn  Jonas
By Dawn Jonas
This is amazing news!!! What an awesome God we have! Way to take down Joe Bully Gavin and team!
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Melissa Standal
By Melissa Standal
Praise God!! What wonderful, amazing and terrific news! I'm so happy to hear this and victory will be had. Gavin and the whole family has come a long way. Hope is what keeps us going and I'm so glad that you never lost sight of this. There is always light through the darkness. You are all amazing....
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Kerry Paulson
By Kerry Paulson
What fantastic news and such a fantastic post you have written Nicole! I'm amazed at how far things have come and the amount of personal growth Gavin, you and your family have experienced because of this trial. The way you wrote this post I could feel it, too. You have a talent with writing that I hope you are aware of and suggest you write a book or an article including excerpts of your Caringbridge posts.

Praising God with you!

Kerry
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Denise welk
By Denise welk
This is amazing news! So happy for all of you,
especially Gavin. May God continue to bless
you all!
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