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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 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 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 loving being a full time third grader.


Latest Journal Update

Some positive changes

Gavin has been improving physically and not needing as much medication the past couple of days.  Yesterday, the kids had a water fight and went to the park. He chose to run a little bit.  Last night he learned a new karate kick that is quite difficult for balance, but he was practicing at home after and was getting it. It is crazy how balancing on one foot, or spinning on one foot, in this case, is tricky for him but he has an amazing core strength. He challenged his gymnast sister and the rest of us to plank contest, and won easily. He holds it for minutes, and is solid. No moving, no shaking like the rest of us.  I think his core strength is so strong because he is always compensating for balance. 

Gavin has not had any zofran since Monday and his tummy is getting the much needed break.  I am praying that the choice we made to take 2 months off does not take us back at all. I need to know though. If it grows, even one cm - we are back on the med. But then I can tell him, that he has no choice other than to feel ishy and take meds.  He completely understands and is glad to have the break.  Imagine what it is like to try to focus/learn while being the most tired you have been in your life, but you drank 6 cups of coffee. You are awake, because of the caffeine, but your brain is just not as reliable. This is how it is for Gav when he's on Palbo and a stimulant.  I hope to see how his brain does with adequate rest and not fatigued. We have dropped the stimulant from two pills a day to one pill, and it is a very small dose of 5 mg. My hope is that we can drop it completely once his counts are back up, maybe next week or so.  

After our dog passed Tuesday, Gavin was a wreck. Yesterday morning, he forgot for a little bit and then stood in the kitchen (presumably waiting for her to come bug him) and began to cry. He looked at me and said "mom, I feel so empty". That is exactly how our home feels. I usually could not go anywhere in the house without Karma following, so I catch myself bracing for her to be in my way... When we come home, I look in the front window, where she always would pop up to see who it is.  We are all sad, but Gavin is definitely having the hardest time. I will be keeping him busy as that helps me too. 

I need to make appts for ophthalmology and neurology, probably for August. Also, he will see Neuropsychology before school starts again.  Tomorrow he has an audiology appt in St. Paul, and in early August he has an endocrine appt. All kiddos have dentist appts at the end of August (it's been way too long as Gav's appts and hospital stays have been trumping dentist) and then he will have scans and brain tumor clinic appt with neurosurgery and oncology. Whew. I think I will aim for July for the ophthalmology and neurology, because August is going to be busy.

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Comments

6 Comments

kk love
By kk love
Aw wow poor baby. I know the passing of a beloved pup at an early age is heart wrenching.
Possibly take a day or two and try to introduce Galvin to a pup in need. I know he!ll relate to that. But let him do it on his own time structure. Only he'll know when it's right. He'll find another love. Not Karma of course, but he'll find a baby to love. I'd take him to a shelter and explain how there's a pup just waiting for him to love. A special love. I know it'll never be Karma but it'll possibly open his heart to another.
Hugs & Prayers in this direction.
Kim
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Pat McGee
By
Gavin, my heart goes out to you!!!!! Keep up the work with the karate & all of the things that fill up your summer.
Prayers out to the entire family

Love & Peace always dear ones
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Michelle Bangert
By Michelle Bangert
Glad to hear that Gavin is feeling better. I'm also sorry to hear about Karma. I know what you mean about bracing yourself so you don't trip over them. They love to be underfoot, don't they :) They definitely are a part of the family in every way. Sounds like things will be very busy. I hope that you find plenty of time to enjoy summer with the kids! Blessings to you all <3
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Sandy Buchman
By Sandy Buchman
Glad to hear Gavin is doing well. So sorry to hear about the loss of your dog. It's hard to lose our furry family members.
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Amanda Bekric
By Amanda Bekric
Praying for you all vibrantly
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Anne Flynn
By Anne Flynn
Thanks for the update. I read this every time you post. I am so happy that Gavin is able to be off Palbo for awhile. I'll pray that there is no more growth during this time.
Please hug Gavin for me and tell him Karma is waiting for him on the Rainbow Bridge.
https://rainbowsbridge.com/Poem.htm
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