DIPG: December 2018 - March 2021
Forever Age: 13
This is Tate. He has the most infectious smile and good natured heart. He can sit down with anyone from 0-100 and have a heartfelt conversation with them and if they don’t speak yet, he will make them light up with a smile as big as his own. Tate loves sports of all kinds, especially basketball, baseball, and golf and loves his hometown Raiders, Chicago Cubs, LA Rams, and Iowa Hawkeyes. We have always been a pretty busy family, so Tate was no exception. It was during one of our busy times of year, basketball, that we noticed Tate was not himself. He was struggling with lack of coordination, double vision, balance, and other concerns. Originally we weren’t sure how much of that was attributed to being a growing 11 year old boy and originally we thought he may be having vertigo, but after watching him for another couple days and doing some exams, our eye doctor was able to order a MRI with our general physician’s support. It was the day of the MRI, December 12, 2018 that our lives changed forever. After the MRI we were sent to the ER at the University of Iowa and by the next day, December 13, 2018 that Tate was officially diagnosed with DIPG.
31 rounds of radiation began immediately and by the end of February 2019, his tumor had responded well and shrunk. Our family took full advantage of how well Tate responded and we continued living our busy lives. Tate attending school nearly full time during radiation and we took some amazing trips as well. We went on a beautiful Make-A-Wish trip along with some other vacations with family. During that time we were also looking into different trial options and after much thought and prayer, decided to enroll in a CED (convection enhanced delivery) trial at UCSF in San Fransisco. While this required a lot of travel and some significant time away from home, we were blessed that Tate could receive 4 different rounds of treatment with his tumor remaining clinically stable from May 2019-December 2019. During the summer, Tate was able to play some baseball, travel, and celebrate his 12th birthday! In December, we made the decision to end our enrollment in the trial due to some side effects Tate was experiencing. As a family we knew that we had been given the blessing of time and that is was time to be home and let his body recover. We began looking into some other treatment options and began researching the use of ONC201.
In January of 2020, Tate began displaying symptoms similar to those we saw in December 2018. A MRI revealed that there were 2 areas of possible progression that we had not seen before. Due to this, Tate was eligible to receive ONC201 through compassionate usage at the University of Iowa, which is only a 30 minute drive door-to-door for us! Tate took his first dose on Jan 10 and has had no negative side-effects at this point.
We have always said that DIPG will not define who Tate is and we will continue to live everyday like we would and Tate is a shining example of that. His smile continues to inspire those who we have known forever and those who we have never met in person. His participation in activities might look different than it did 13 months ago, but he is still the same Tate who instead of playing basketball is now drawing up plays for his classmates or learning how to do doughnuts in his wheelchair. His faith that God has a plan for him is inspiring and while we have our days when darkness tries to creep in, we are quick to remember that we will fight this monster with everything we have and when we are tired, we have an army that will fight for us.
Quotes: “Nobody Better”
“God only gives His toughest toughest battles to His strongest soldiers”
“Don’t Give Up…Don’t Ever Give Up!”
Thank you for choosing to donate to the Cannonballs for Kayne Foundation.100% of this donation, after credit card processing fees, goes directly towards aiding families in financial distress.
Help us SKIP the FEES: If you would like to make a donation by mail, please send a check to Cannonballs for Kayne Foundation; P.O. Box 1738, Ormond Beach, FL 32175 and write the person’s name in the memo.
The family receives notification of all donations made to this honor fund.
Your gift honoring Tate will MAKE WAVES for DIPG!