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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

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Gavin had his neuro oncology appt today. Dr. Schultz was amazed at how good he looked, his improved balance and that he no longer has right sided weakness. His eyes continue to be the most affected deficit from the tumor and surgeries. They will continue to adjust. Gavin does well using what he has in terms of turning his head due to the field cut and using peripheral vision because of the vertical paresis. Gavin is healthy, growing, and just a kid with a brain tumor.

We talked about Palbociclib, the drug Gavin was given compassionate use two years ago- that saved his life! Now that it is FDA approved, we will no longer be able to get it for free. We are praying that insurance covers it- and jokingly discussed that if they want proof it works we will send the case study... About Gavin... On Palbo. I'm not sure what the cost would be, if it would be the same as other prescriptions if they cover it, or how much it would be if they don't. We will cross the bridge soon when they notify us of approval.

We discussed that Gavin is doing so well. We've been able to eliminate two meds, he is at school full time, in karate, and excelling. Taking Palbo away right now is just not the right move. We talked about repercussions if Joe bully decided to grow and are not willing to go backwards. We will plan a visualase procedure for late spring and will continue to treat the tumor as having the ability to grow. We don't know what's dead and what isn't but either way there is still tissue there that the laser can shrink- so that's what we will do. Brain surgery is just something we will be doing every once in awhile. In between those we will watch Gavin LIVE. We will watch him inspire, lead change, encourage others fighting. He will continue to celebrate his 9th birthday- something we didn't know we would get.

I wish we were out of the woods. Had no evidence of disease (NED), or were in remission as cancer patients call it. But we don't have that. We have a large monster that we are taking down- and it's taking forever. BUT thank God we have treatment that works, and we have Gavin with us and he enjoys and embraces life every single day.

Thanks for continuing to read Gavin's updates. We are coming up on three years April 7th. We hope to be able to continue good updates and that we never have a growing tumor threatening Gavs life again. Knowing it could stop responding to Palbo and could start growing, is unthinkable. But we have to think about it every day. Because unresectable mature teratomas historically take lives and Gavin is trying to change that with new treatments but nothing is guaranteed. We are hopeful and thankful to be where we are. And it's all about perspective and only allowing the current situation to get our time and worries. For now- Gavin is winning.


9 days and counting until the trip! Not sure I will update before we go- but will for sure post the pics and videos of the big surprise!!
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Comments

6 Comments

Rebecca Reid
By Rebecca Reid
I'm so thrilled each time I see Gavin...how amazing. He is the most courageous, awesome trooper ever!! And your perspective and ability to share with the rest of us through your words has such purpose. You have all touched so many through this journey, and it is so great to see him and hear his hilarious jokes and see that stunning personality shining! Thank you God!! We love you Pierson family!
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Marie Dehn
By Marie Dehn
So happy to hear things are looking up.I thank God for taking care of Gavin and the family. Enjoy your trip.
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donna bolles
By donna bolles
So happy that things are going so well for Gavin and your family. One day at a time is the best motto. I praise and thank God with a grateful heart for what he has done in Gavin. Looking forward to seeing some photo's of your trip. I hope it delivers wonderful family memories, laughter, and fun! Blessings, 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.
caringbridge.org/visit/averyevans
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Kathy Molenaar
By Don & Kathy
Good morning Nicole-thanks for the update on Gavin. It sounds so good. We continue to pray for this young boy who has gone through so much but continues on. God is on your side. "In this world, you will always have trials and tribulations." God is giving you the strength to met this problem head on. And He will not give up-neither should you. Am excited for your family and your upcoming trip. What a joy for all of you. Be strong and KEEP SMILING. Love to all
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Spencer Brandsrud
By Teresa Brandsrud
This entry warms my heart! I am so happy for Gavin and for all of you. Enjoy the trip, it is going to be awesome!!
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Pat McGee
By Pat McGee
Pearson family
It has been a long journey but one that will pave the way for others
I don't always respond to the posts, but so look forward to reading them
Take care
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