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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

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The tumor markers are normal. Thank God. The growth isn't cancerous. We don't know what the growth is and why it's enhancing. Dr. P is more convinced that the areas of enhancement are ablation related now that markers are normal. He just needed to rule out the tissue looking different as malignant transformation. Teratomas are evil. They can be cancerous, turn into growing teratomas and become teratomas with malignant transformation.


The plan is to repeat the MRI in late March and watch for any neurological changes that may be related to the shunt. We didn't adjust it yesterday because we wanted to get tumor marker results first. We may bring Gavin in to have the shunt adjusted before scans if he is experiencing symptoms. The vomiting has subsided the past few days since we started Zofran. We hope that the growth doesn't cause any issues with the nearby blood vessel.


This morning before I heard the results, I felt scared yet at peace. The sunrise was amazing and I just felt helpless yet taken care of. Like no matter what, God has this. This really helped me get through the day wondering what was going on. I feel like I was brought back down to reality of this ugly disease when I heard of the possibilities yesterday. For 8 weeks we will try to live, the thing we are fighting so hard for, and know that we are in good hands at Childrens. I know that Gavs medical team will never give up on him and with any bump in the road they will be there to soften the blow and repair/prevent those bumps to the best of their ability.


Thank you for kind words of encouragement and caring. It means so much to us 💓

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Comments

13 Comments

Carol Covato
By carol covato
Way to go, Nicole!!! Keep thinking positive! God will see you thru this,no matter. Prayers for you and family!
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Miss Ginny Shunkwiler
By Pastor Ginny
Great report. I love your perspective. No matter what the tests results in the natural are...you got this...but we sure are glad that you don't have to go through restoration from a negative report. We pray for Dr. P ... all the time by name. We also pray for any doctors, nurses and technicians that come within Gavin's realm of influence. Are their other medical professionals key to Gavin's care that we can pray for by name?
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Robert Saumweber
By Bob and Kate Saumweber
Prayer Works! We continue to pray.
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Michelle Bangert
By Michelle Bangert
Thank God is right! I hope Gavin's other icky symptoms subside. Your words are always encouraging and Gavin has the best parents, family and team on his side, fighting along with him. Hugs to all of the Piersons!
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Patty Lamolli
By Patty Lamolli
God will NEVER give up on you. Gav knows that I think better than we do. He is an amazing young man. Peace be with you.
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Andrea Andersen
By Andrea Andersen
Thinking of you guys. I am so glad his tumor markers came back in acceptable ranges. I get happy when mine come back within the less than range. Prayers they find answers quickly.
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Rebecca Reid
By Rebecca Reid
Praise God for normal tumor markers and no cancer! Praying for continued peace to surprise you around the corners ahead. Love you guys!
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barb hunt arends
By barb hunt arends
I'm so happy that you felt God's presence even in the midst of the deja vu you are going through. He is ever-present and unchanging. We will keep praying for you all.
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Michele Flaming
By Michele Flaming
Prayers are answered!! God is good, all the time! Brighter days are ahead.
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