Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. We haven’t been great about updating this site. We are about to be embarking on a new leg of our journey. This will probably be the best way for us to share info on a broad scale.
So in case you missed it, or are just now finding out about John’s Big Adventure, here’s a recap!
July 6, 2016 John has seizure while driving to work. It was on I-75 and only a single car accident. While in ER the doctors discover an extremely large, deeply infiltrating brain tumor. He is admitted to surgical trauma ICU. Our oldest son was 16. He was no longer in high school, but taking classes with Berklee College of Music online waiting for us to okay moving to Boston. He takes over management of the house and all things on the home front. Pets, working with family to care for his younger brother.
July 8, 2016 First craniotomy. Dr. Rowe in Macon. Long surgery. He nor his partners have seen anything similar to it in real life. Only in text as a rare brain tumor. We stay in Surgical Trauma ICU for almost 2 weeks. John was doing great, but the size of the tumor and pathology put him at risk. When we get pathology back it is an Oligodendroglioma. Overall not too bad a tumor in brain tumor world. Rare, but not GBM. However, John had an additional phrase on pathology: Gliomitosis Cerebri. It’s horrible. Just Google it. Basically, unpleasant relatively quick death sentence. However, while we are living this the great minds in the world of brain tumors is meeting in the same month. They change the wording and grading of Gliomitosis Cerebri and have a small cluster of these in people like John who have this enormous tumor with tentacles threading through multiple areas of their brain, but don’t have the same symptoms as those who typically present with this. Of course, we learned this much later.
I, the wife, completed a self referral to The Robert Preston Tisch Brain Tumor Center while still in the ICU. The staff and doctors were great, but we felt we were just hanging out in the ICU and they probably really needed the bed for someone else. Less than 24 hours after sending the self referral, we had been contacted by Duke and had a plan in place for surgery #2.
July 26, 2016 We arrive in Durham. John does not remember much from just before the seizure on July 6. We both were dazed. Duke Brain Tumor Center is completely accustomed to dazed, new to the tumor world patients as well as the ones who find out in non emergency fashion. They walked us through and before we knew it John Had his fMRI and was prepped for surgery. His parents and I were there along with a great friend Mary Ka Powers. Joshua was still in Macon taking care of the home and completing any scheduled gigs in Atlanta. Jonathan was with my parents.
August 2016 We are just returned to our house when John shows signs of a DVT. The ER at Navicent works with Duke and has plan. We get admitted to the floor and our hospitalist decides to change the plan without telling us. John then has a bi-lateral Pulmonary right in front of me. Honestly, this was the worst part of it all. Plus having had 2 craniotomy’s in 1 month John’s language was not great.
2016 to May 2017 Recovery at home, but going to Duke every 6 to 8 weeks for MRI and follow ups. Little expectation he will make the 1 year mark. Joshua goes to Boston and Berklee while Jonathan learns life as a only child at home can be pretty cool. No treatment protocol other than quality of life.
May 2017 - October 2018 Tumor is regrowing. We qualify for a study at Duke. John is doing well over all. He has brain surgery #3 in August 2017 and does a year of chemo and the Resist trial. Back and forth to Durham every 28 days for a few days. In October we return to our no treatments and enjoy life. Joshua comes home to enjoy time with John while he is doing so well.
April 2019 We find out surgery #4 is needed followed by a change in treatment. We are waiting for the date for #4 but are told it will be in the next 2 weeks. Then within a week or 2 radiation will start in Durham an additional 6 weeks. As we have learned, John is a champ in all of this. He continues to feel blessings in every step of this journey. There are so many things that happened that should have been horrible, but instead went really well. As a Christian family we believe the prayers have made a difference along the way. This journey has definitely been a journey set on knowing HE has plans that were made just for John. Since the day of the seizure on 75, our lives have drastically changed. We all miss what we had, but we also are thankful for and love every breath we have together.