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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 has officially made it to school, without being sick or anxious for two whole weeks.  He has been feeling really good - especially since he just ended Palbo this week.  Usually he gets very fatigued when he is at the end of his cycle but he has been so energetic!  He has continued Karate 3 times a week and is doing so well.  His balance, memory, and processing have all improved since beginning this.  He takes it so seriously!  He said his master Kayla would be so proud of him!  She was his PT this summer and she did ninja training with him, which he so looked forward to.  Starting today after school the kiddos have 16 days off!  I cannot wait to spend time with them.  It will be nice to have a break from the routine!  Gage has been tired this week and I think he really just needs a mental rest.  For Christmas next week we will be super close to home on Christmas Eve, at my parents house and then not sure about Christmas day yet.  I cannot believe it is next week!  Although we are more prepared than the past 2 years because Gavin is so much healthier.  What a blessing that is.

Our family has had a very difficult, heartbreaking couple of years.  My dad lost his sister and brother just months apart, and Gavin was diagnosed with a brain tumor in the middle of those in 2012.  I left Gavin at the hospital during chemo to attend my aunt Judy's celebration of life.  I wasn't able to attend my uncle Bob's funeral because Gavin was diagnosed 2 days before and he was having a brain surgery during the funeral.  A year later, my sister in law's mom, who I was very close to, passed away from Ovarian cancer.  She was so full of life just days before passing.  I sat with her on a Friday, 3 days before she passed - and she had tears as she told me she wanted to live and she made me promise I would take care of Azra.  To hold a dying woman's hand and wish you could somehow give her some of your life is indescribable.  A year ago tomorrow, my aunt Birdie (my late uncle Bob's wife) was crossing an intersection after work and was struck and killed by two teenage girls.  We have been struggling with her sudden, preventable death and are in the middle of a wrongful death case.  There has been cover up and lies to our family and we are now uncovering important details that will help us get justice for Birdie.  Sadly, just weeks after her death, my cousin suddenly lost her 3 month old baby. I attended my aunt Birdies funeral about a week before an innocent little baby's as well.  Gavin had just been diagnosed with blood clots in his brain weeks before this all happened.

We feel such loss, and at the same time, by the grace of God, we feel hope.  Hope that our loved ones are safe and that this life is not our home.  Hope that we can heal our hearts with memories of so many loved souls.  Gavin has witnessed all of this loss around our family, knowing his fate was to be in heaven as well.  But he is here, and he is singing loud for all of them.  He prays that they are okay and that he will get many more years with the many loved ones still with us.  I remember thinking to myself, that if God took Gavin from me, at least I know he would be welcomed by so many.  This is a sobering thought, and disturbing maybe to some reading - but that was my reality many times.  I was losing Gavin.  There was no cure.  He was slipping away, and thoughts of living without him consumed me at times.  Having to consider your child's funeral is something I never thought I would have to do.

We are beyond thankful that we are where we are today.  This tumor does not dictate Gavin's life right now.  I called to set up Gavin's next MRI yesterday.  It will be towards the end of January and they will do another 3T MRI, which was done in October before Visualase.  Hopefully this will give them good information as they compare the two of them.  If you recall, last time they tried to decide if the tumor was dead tissue or still contained live tissue - the tumor showed up inactive.  This is very good - because either it is completely dead as all blood supply has been interrupted - or it may have a few cells but not enough to grow in any significant way.  Looking at Gavin - who never takes naps anymore and is rocking Karate, I know that Joe Bully is down.  Or as Gavin would say "D.O.W.N!"

Monday Gavin is attending WWE in Minneapolis - ringside!  The T.V. show The Doctors, which we were on in June, gave 4 tickets to the show to Gavin!  Steve is bringing Gavin, Gage and Braden, Gav's friend since they were babies and they played t ball together before Gav was diagnosed.  Gavin is so excited to attend.  He had tickets last February, but it was just a couple of days after Visualase surgery and he was so tired.  Even if you are not a wrestling fan - watch the Monday night Raw to see Gavin ringside :)  I believe it is on at 7 pm.  I hope every person reading this, despite hard times - can find some peace and joy this holiday season.   God is in control.  Live life while you are here.  God bless you all!






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Comments

8 Comments

Bev Hermanstorfer
By Beverly hermanstorfer
Thank you for all of you updates and word of wisdom, that God is in control.
Tell your mom hi I stated following your families journey when I worked with her at RHS. Tell her I would love to hear from her.
Beverly Hermanstorfer.
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Dana Lopez
By Dana Lopez
Excited to hear how well Gavin is doing!! Merry Christmas!! Praying your able to enjoy the joy of the season!!
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Kelly Schroeder
By Kelly Schroeder
God Bless your family over the holiday season:-)
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cathy kulla
By Aunt Cathy Kulla
I have not logged in to read your journal for a while. I pray that you and your family does not have the loss of any more loved ones for a long time. may this blessed holiday keep your all healthy and happy.
love
aunt cathy
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Allen Johnson
By Allen Johnson
Hi Fam :):):):) Merry Christmas!! Your Faith is strong which gives you that indomitable spirit.. Praise the Lord. My prayers are with youse.
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Tammy T
By Tammy
Merry Christmas, Gavin! Can't wait to see you ringside. I am going to record it to be sure I don't miss it!! You are an inspiration!
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Pat McGee
By
From one Wrestling buddy to another - YOU CAN COUNT ON ME WATCHING!!!!!!!!!!!!!
It has been a long haul but you are all strong & things appear to be moving in the right direction.
God bless & keep you all!!!
The door is always open on holidays!!!!!!!!!!!!!!
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Lori Schumann
By Lori Schumann
Nicki, We sure do miss you at RMS but are so happy you can spend time with your children. I certainly hope you, Steve, and the kids have a very joyous, healthy, Merry Christmas and all the best in the New Year.
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