Hope Through Hollis: looking forward.
Those who follow us on Facebook have probably noticed that we’ve started using the hashtag and motto of “Hope Through Hollis.” The morning after he went to Heaven a good friend stopped by to see us and spoke about the impact that Hollis and his campaign for life had on so many people. He said “now many people have found and will find Hope Through Hollis!” We thought that small change of a word was profound and gave us strength through the darkest days of our lives the past 2 months. The reality is that Hollis has found his forever Hope and that is life eternal in Heaven with Jesus. Those of us left behind are struggling to deal with the loss but searching for Hope of our own.
Early on we knew that if Hollis did not survive DIPG we would donate his tumor for research. Some of you may know that we have a close friend named Dr. Michael Berens, Head of the Glioma Lab at TGen (Translational Genomics Research Institute) in Phoenix. The day that Hollis was diagnosed, he was one of the first people we called looking for wisdom and direction. He gave us much guidance, including telling us to have the “Most Best Days.” (Yes, he coined that infamous phrase that many of us now live by.) After we discovered the IOZK clinic in Germany and the Immunotherapy Treatment there, he skyped with Dr. Stefaan Van Gool to ensure it was a safe and sound treatment offering Hollis the likelihood of the Most Best Days. Throughout the 9 month battle with DIPG, we spoke frequently with Dr. Berens about the latest clinical trials or opportunities for DIPG patients. When Hollis died unexpectedly at 7:25 pm on January 2nd, we knew we had to act quickly to donate part of the most precious thing in the world, our son. We knew there was no one we would trust more than Dr. Berens with this gift, so we made the call.
TGen does genomic testing for hospitals around the world, including some offering current DIPG trials. In an effort to find a cure for DIPG, they have proposed a 2 phase project called DIPG Atlas. Phase 1 will focus specifically on Hollis’s tumor and how it compares to those of other children with DIPG using a powerful approach known as whole genome sequencing. TGen scientists are pioneers in using sequencing to decipher a person’s DNA; as for many cancers, this method may reveal the uniqueness of Hollis’s tumor in ways that are both powerful and instructive. Since he lived free of symptoms for so long and then died suddenly, we are eager to learn more about what role his Immunotherapy treatment played.
Sequencing will allow the scientists to look across Hollis’s entire genome – the complete genetic code of his DNA – and develop a comprehensive view of the potential genetic origins of his disease. They will then compare this information to other DIPG sequences freely available through an on-line database housed on CAVATICA website. An additional goal is to use genomic sequencing to determine whether specific molecules developed within Hollis’ tumor were capable of prompting a positive immune response. TGen, under the direction of Dr. Michael Berens, will collaborate with Dr. Stefaan Van Gool of the IOZK Clinic in Germany. TGen will prepare a case report for peer-reviewed publication, as well as present their findings to us as soon as they become available. The project is expected to take six months.
This is a lot of information for regular, non-scientists to understand, so we will save the details of phase 2 for another post! However, this 2 phase project will require financing and that is where we need your help. On May 7th, Hope Through Hollis will be partnering with TGen for their annual Cycle for the Cure. We need spinners in the Phoenix area to help raise money to find a cure for DIPG! If you aren’t in the area, consider donating to the riders!
For more information on TGen https://www.tgen.org/
For more information about Cycle for the Cure http://events.tgen.org/site/TR/cycleInternal/CyclefortheCure?px=1028346&pg=personal&fr_id=1243