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Updates on Owen
11/14/2016 Latest post:
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.
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Owen is currently undergoing chemo and radiation treatment for a stage 4 brain tumor. As you all know, this isn't his first experience with treating his recurring glioblastoma, but a 12 year journey that's previously included one bout of surgery and one bout of radiation. Given the current presentation of the disease, he required a craniotomy followed by chemo and 5 weeks of radiation. The chemo and radiation just started a week and a half ago, but he experienced complications of acute and unpredictable bouts of weakness and confusion related to a sodium imbalance and increased swelling around the brain. While normally that would be treated by steroids, Owen experiences adverse reactions to those medication.
He's now inpatient at Johns Hopkins in Baltimore. The goal is for him to start radiation again on Monday (11/14). His neurosurgeon believes this is critical for halting the progression of the disease. Tomorrow, we will be having a team meeting to include the whole immediate Reilly family (remotely and in person), along with the medical and social work team to discuss the next steps. Because of his unpredictable presentation, once he does return home, my dad will require 24-hr supervision to assist with medication delivery, assist him with getting some safe and regular exercise, and basically monitoring him in case of periods of confusion where he'd need help or a reminder of the strict rules associated with taking oral chemo.
My mom's plan at this point is to employ nurse aides from 8-2:30pm. From 2:30 on, he'll be with one of our wonderful friends or family members to bring him to radiation, and she'll arrange her work schedule to be home with him upon his return and through the night. Of course, this is all subject to change.
It's an intense schedule, and as you can imagine, incredibly taxing on Janice. We really don't know what the future holds for Owen beyond these next 4-5 weeks of treatment, but we can only be hopeful and continue to pray that all of these interventions have a positive outcome. He has periods where he's completely healthy-seeming, both physically and mentally. You'd never know he had his head cut into just a few short weeks ago because all of his hair has more than grown back! He does get tired more often, but he loves to still talk on the phone and visit with friends and family.
We so appreciate your prayers and support. My mom is such a strong woman, and is typically pretty resistant of offers of help because she's always figured a way to do it on her own. My sister and our local network of friends have been a huge help so far. But we don't know the level of assistance my dad, and thus, my mom, will need in the future. I'll be doing my best to keep this page updated to provide notes on his progress and to ask for help, your love and your prayers. Thank you, Cyndi