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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, which was approved by the FDA in 2014. 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.  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. **Gavin's next procedure is October 14, 2015.  

Latest Journal Update

Giving Tuesday!

After black Friday and Cyber Monday, comes #GivingTuesday.  Tomorrow morning, Gavin and I will be on WCCO live at 6:40 am to share how we used Caring Bridge throughout his journey. Please tune in or record :)  And, please consider giving to Caring Bridge to help the site continue to be ad-free and a place where people can go to share their journey.  

Gavin had a hematology/oncology appt last week as well as neurology. His lovenox levels were checked (blood thinners) and they are within normal range yet on the high end.  This is likely why he has been bruising more easily and when we insert the insuflon catheter to inject the medicine they are not lasting as long... Gavin has been on blood thinners for over two years when all of his sinus veins draining blood from his brain to his heart were clotted. The injections are not fun, but we are so thankful he made it through such a serious diagnosis unscathed. Oncology said he looks wonderful. Neurology noted a few small things that have been ongoing, like balance on his left being slightly more shaky.  We are considering switching from methylpheidate that he takes for fatigue and better focus/attention - to modafinil. It seems to promote wakefulness without the tremors that are a side effect of methylphenidate. Modafinil has been used for brain tumor patients experiencing fatigue with promising results. 

We do not have Gavin's next scan date yet, but will be scheduling soon. It will be late January and we will get to see how much the bully has shrunk. Later this week, Childrens will be posting the video from the surgery and you can see the amazing technology they use for these laser ablations.  It is so cool. Dr. P is very optimistic about this new laser and hopefully Childrens will have future access to use it again for Gavin. I will post the video link here as well as on facebook once it's available. Thanks for reading all!