Dad is being transported via air to Greensburg, PA, and will be staying at the Twin Lakes Rehabilitation and Healthcare Center. The cost of the transport is not covered by insurance, but we are very happy that we found a facility that will support his needs and is closer to family and friends!
Please contact any of us if you'd like to connect with mom and dad. We have been very blessed by the support we've gotten from so many, including staff at the hospital where dad has been since May 1, our patient advocate in Norfolk, and the amazing friends, family, and coworkers who have supported us in many ways throughout this very difficult journey.
Because dad's condition is so rare and unpredictable, we don't have a prognosis. We see improvement at times in increased awareness and movement, but he's still not clearly and consistently responsive. A month after the GBS diagnosis, dad experienced an autoimmune attack to his central nervous system that might be ADEM, but this is not a confirmed diagnosis. It's believed that all of this was triggered by one of the immunotherapy drugs that were part of his cancer treatment, a rare side effect. This has been immensely challenging for us as a family and we wish we could share more positive news. But we are thankful to have dad and mom back in PA.
Larry Peperato is facing an acute case of a rare, terribly painful and debilitating syndrome called Guillain-Barre. After a successful battle against bladder and colon cancer this winter, he was admitted to the hospital on May 1st for an infection. A week later, he felt tingling in his extremities, followed by an inability to move and breathe. After Larry’s initial paralysis, he developed pneumonia and sepsis. His infections cleared, but then he developed a few GI bleeds, which are now under control.
Most recently, Larry is in a coma, although he is occasionally responsive. He’s had a number of additional complications that come with Guillain-Barre. His paralysis is a roller coaster of gains and setbacks. He can only (with focused effort) move his fingers and toes slightly and has minor control of his head. He can’t speak due to a trach tube, but before the coma, he had been trying to communicate with us with head, eye, and finger movements and was starting to whisper. He is on a ventilator and is being weaned, with up to eight hours a day breathing on his own.
Based on GBS survivor reports and medical documentation, his recovery looks to be a continued path of one step forward and two steps back, and will last months, maybe years.
So, more than a month later, Larry is still in the ICU facing many complications. Anyone who knows Larry knows he’s a fighter, though. He tackles physical therapy with fortitude. He is determined to to recuperate. We know he wants to return to his family, to enjoy more moments with his wife, kids, and grandchildren.
We write this to you as Larry's children, six-strong, carrying the love, strength, and determination that our dad has embodied his whole life. He has been our rock, a pillar of strength our whole lives, working hard (3 jobs at times) to support his wife and family. He has always been there for us. Now we need to be there for him to give him his best chance at making a full recovery.
Larry’s case of this rare syndrome is extreme and will require a long period of recovery and around the clock bedside care for quite a while. However, we all live far from Mom and Dad and will need to rely on a combination of absences from work and hiring caretakers so that Mom doesn’t have to face this alone. Mom and Dad moved down to our brother, Mike’s, house in Portsmouth, VA when they retired, but he is away through the summer due to his employment with NOAA, so we're all trying to step up and help in any way we can. The funds from this campaign will be used for caretakers, travel expenses, expenses due to missed work, and assistive technology and other supports needed to help Larry throughout his recovery. We want Larry to be in a facility that specializes in Guillain-Barre, so are seeking transport to another facility, which would also require lodging for those taking care of Larry.
Much about the progression of Guillain-Barre is unpredictable, but what IS known is our love for our father. We wish we could handle everything he needs ourselves, but we are grateful for the support system we have, especially in this time of crisis. We have no idea how someone with less than the Peperato army behind them would be able to navigate the healthcare system and this terrible syndrome.
Larry has always impacted others with his kindness, generosity, charm, humor, and devotion to God and his family. From his youth in Jeanette, PA, to his service in Vietnam in the Navy, to his years at Volkswagon, WCCC, and Powerex, his golf league membership, his regular attendance for years at Armbrust Wesleyan Church, and coaching basketball and little league, he has touched many lives. We know that he has more to give and hope that, with your kind support, we can give him that chance.
With all our love and appreciation,
The Peperato kids