Hi everyone!
We hope that you all had a wonderful Christmas! We thoroughly enjoyed our Christmas with friends and family and we feel extremely blessed!
Reyn and I had an appointment with the radiation oncologist today at Emory. We learned a lot about their recommended treatment and plenty of interesting facts so here is the breakdown. We met with Dr. Ian Crocker, whom we both really liked. He spent almost 90 minutes with us describing various courses of treatment and listening to our concerns. 90 minutes for a physician is extremely rare these days so I was very grateful for his attentive care. He even let us see the 3D images of the MRI on his imaging software and gave us a copy of the path report. Very helpful and informative!
Dr. Crocker recommends a treatment regimen of 6 weeks of radiation, 5 days a week followed by chemotherapy. (Some of this will get technical so if you want to skip ahead feel free to do so.) Reyn has a tumor that has chromosomal deletions of 1p, 19q, and IDH1. What does that mean exactly? It means it is favorable news as far as treatment is concerned. These types of tumors respond well to radiation and chemotherapy typically. The chemotherapy is recommended due to these deletions and should begin immediately following radiation. The chemo will be delivered orally 5 times/ month and should have minimal effects on Reyn. He recommends the use of Image Guided Radiation Therapy (IGRT) using the Rapid Arc method. The Rapid Arc means that they arc the beams of radiation and are more able to deliver precise amounts of radiation directly to the tumor, minimizing damage to any good cells surrounding the tumor. Each session will take about 40 minutes total, with the actual radiation treatment lasting about 10 minutes. These are Dr. Crocker's recommendations but he will discuss Reyn's case with Dr. Voloschin, the neurological oncologist at Emory along with a team of neuroscience professionals in order to decide on the best course of treatment. I like that every case is presented to a "team" in order to determine the most favorable treatment. So, we will meet with Dr. Voloschin soon to further discuss his radiation options.
If we go this route his radiation will definitely be at Emory. They have a team that only deals with brain tumors and when receiving radiation treatment, you want to make sure your radiation therapist is precise! ;) We are still planning on going to Duke for a 2nd opinion so that we can make the best decision regarding Reyn's treatment. We ask for your prayers as we make these important decisions.
Some other great news we received is that Reyn's likelihood of another seizure will be decreasing over time. Of course there is a chance as with any tumor patient, but if he had a problem, it is more likely to be a smaller tremor or twitch. But as time goes on, even this is more rare considering he is on anti-seizure medications and will be for some time. Reyn was excited to hear that he can continue to work through radiation and chemotherapy and that each of them should have few effects other than fatigue and a possibility of some hair loss. He has been debating "buzzing" his head for years so this might be the perfect opportunity!
We will continue to covet your prayers as we make decisions regarding treatment and looking ahead to baby Grier's arrival. The clock is officially ticking at this point. We know juggling a newborn, radiation treatment, and planning rides for Reyn to work and radiation will be much to manage but we know it can be done! We are so thankful for each of you who have volunteered to help with transportation as this will be one of our greatest needs. You all have continued to be blessings and miracles to us. Thanks and love to you all!
More to come, but that is the latest. Back to work in the morning! Busy days are planned!
Jordan and Reyn
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