Aloha Family, Friends and Peers. I've decided it's time. It's time to start a LFEBridge for two main reasons: 1) To create a platform to update those that care about Bev on her condition, and 2) To provide a venue for those that would like to help. Before I dive into it, I'd like to acknowledge I've been a bit digitally reclusive. It probably goes without explaining but the last 8 months have been extremely difficult. Sleepless nights. Tear-filled drives. Worry-filled waiting. I didn't want everyone else to experience this kind of pain. I wanted Bev to recover quickly, text everyone she's kicked this thing's ass, and get back to the way things were. Unfortunately, this isn't the path we're presented with. I'm sorry if I made you wait and worry. Here's Bev's story: On November 16th, 2024, Bev wasn't feeling well. In the days leading up, she had flu-like symptoms and tested positive for influenza. That evening, Bev woke me up and said she would like to go to the hospital. As I was preparing the car, I hear a scream and rushed back to the room to see Bev having a tonic-clonic (grand mal) seizure. 911 was called. Ambulance showed up. Bev was admitted to the ER around 2am. After a few hours of trying antiepileptic medications and being unable to break the seizures, the doctors diagnosed Bev with new-onset refractory status epilepticus (NORSE) and transferred her to Queens Punchbowl Neurology ICU. If you'd like to read more about NORSE: https://www.ncbi.nlm.nih.gov/books/NBK567765/ The next chapter is quite the long one. 250+ days in the ICU which included extravagant amounts of tests, evaluations, treatments, medications, and surgeries. After multiple spinal taps, blood tests, EEG monitoring, Xrays, EKG, MRIs and others, all tests came back without any definitive reason as to why Bev was having the seizures. Her condition still remains an unknown etiology to this day. Her condition is rare. The neuro team went by the playbook and administers the medications and treatments necessary to attempt to get Bev out of a non-convulsive epileptic state. This led to the neurologist acknowledging Bev needed long-term care, inserting a tracheostomy and starting a combination of anesthetics (ketomine) and sedatives (pentobarbital) to place Bev into a coma where she stayed for over 6 months. This continued with months of chemotherapy and autoimmune therapies, hypothermia therapy, the surgical implant of a Vagal Nerve Stimulator, a brain biopsy and more. All the while, Bev was receiving extremely high doses of sedatives & anesthetics to attempt to break the seizures. The amounts of medications it took to keep Bev from seizing were so high, at one point, Bev was on the edge of liver failure from toxicity. Ultimately, the side effects of Bev's treatment have amounted many side effects including Ventilator Assisted Pneumonia, sepsis, drug-induced liver injury, drug-induced anaplastic anemia, and scalp ulcerations from EEG leads. After six months, the team decided it was time to come off the barbituates to get a clinical understanding of how Bev was doing off of medication--not because the seizures had stopped. We completed a sixth MRI and, with a very heavy heart, the neurology doctors started vocalizing the severity of Bev's situation. We were told Bev has had severe global brain atrophy, resulting in Bev being in a persistent vegetative state, or "unresponsive wakefulness syndrome" (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4413244/). That meaning, Bev has lost the brain cells which allow for consciousness but the cells which control the vital functions (sleep cycles, breathing) are still alive. The doctors have said that it is unlikely, based on the MRI and clinical state, for Bev to make a full recovery. This has been devastating. Bev's parents and I are working on getting our third second-opinion, this time from Cleveland Clinic. The first two came back as nothing additional they could do or recommend. ..and this is where we are today. Bev has been an absolute trooper and I am SO FREAKING proud of her. As she continues to battle sepsis, liver damage, lung difficulties and autoimmune issues, any day can be a battle. I'm wholeheartedly convinced that Bev is THE strongest person I know. To our friends and family, I'd like to give a thank you to those that have offered assistance over the last 8 months. It's taken me a long time to accept help and admit it was necessary. We are very fortunate to have had Bev's parents here in Hawaii and they have been by Bev's side the entire time providing love, attention, and support. Please understand I had no idea what to set the fundraiser amount to and have decided based on a median of similar LFEBridge fundraisers. I hate accepting money from others but I understand this is one way people can support. Admittedly, the lack of income, bills and expenses has been difficult. We have made sacrifices where needed, selling commodities and lowering payments. I'm letting go of my ego after many requests to create a LFEBridge. If you're more comfortable with venmo you can send directly to @johnnyfrodo. Happy notes are always welcome. Finally (and arguably more importantly), I've set up an email address. LFEBridge isn't allowing me to post it for security reasons but I will elsewhere. Please feel free to send words of encouragement, pictures of you and Beverly, and funny stories. If you've made it this far, thank you. Thank you for caring about our family as much as you do. Thank you for allowing us into your life. Thank you for all the words of encouragement. Thank you for loving Beverly as much as she loves the world. Stay healthy. Stay strong. Stay positive. Johnny
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