1 in 10 million

For anyone who knew Paul D’Olimpio, there are a million great memories, funny stories, images of him in his desk at D’Olimpio Insurance, out on his front lawn making sure his grass looked great or ensuring the pool was crystal clear for his family. The Santa Clause size stomach was always full from his wife’s amazing cooking or an Italian sub – with HOTS- from New Deal. Paul never stopped working. Whether it was 6-7 days a week at his business or being an assessor all over Massachusetts since the mid 90’s to mowing the lawn, snow blowing the driveway, plowing out his neighbors or making sure that his kids and family were taken care of. Nothing was going to stop him… at least we didn’t think so. And certainly not like this.

After 4 different hospitalizations in early spring 2017 and an extreme loss of over 60 pounds in a matter of a few months, Paul was FINALLY diagnosed with Stage 1 Small Cell Lung Cancer. If that diagnosis wasn’t enough, he was then given the diagnoses of Opsoclonus Myoclonus. This is a 1 IN 10 MILLION DISEASE! This disease attacks not only the body but the brain as well. It causes vomiting, extreme weight loss, “dancing eyes” and uncontrollable dizziness, incessant body shakes and tremors and on top of it, neurological deficits that science has not been able to prove can be reversed. This is such a rare disease that EVERY HOSPITAL/DOCTOR/NURSE/PHYSICIAN we have met has said “I HAVE NEVER HEARD OF THIS BEFORE PAUL”.  It is crazy to think that out of the entire world, people come to Boston - to Mass General Hospital- to be treated, and they DO NOT know how to fight this disease and reverse the damage that has been done!

Since May, Paul has been in and out of Mass General in Boston, Spaulding Rehab in Cambridge, and Spaulding Rehab in Charlestown.  It has been a roller coaster of one step forward two steps back.  One day he would make progress, whether it was walking 10 feet with a walker or answering correctly when we quizzed him about the days or facts of his life and then the next, he has suffered extreme high and low blood pressure, low sodium levels to the point of seizures and losing the ability to walk or stand.  

Paul spent three months hospitalized.  In mid August, had maxed out the 60 days of rehab allotted from insurance, his bags were packed and he was sent home with best wishes for my mom to be a 24 hour physical therapist, occupational therapist, nurse, home health aide and transportation.

He has had many ups and downs in his health since we got these diagnoses but at this time, Paul cannot stand even with supports. He is unable to do any activities of daily living whatsoever without my mothers’ 100% support or the help of a few aides that come by 1-2xs a week for half an hour. He cannot be left alone for any matter of time because he does not remember that he cannot do what he used to. He has fewer and fewer moments of being lucid, often telling us that he has job interviews set up, that he has seen a former client earlier in the day that actually hasn’t seen in years, or that he cannot remember that he has a new, 4 month old grandson.

All while this has gone on, the current status is that we have had to close our family business, Paul’s life long work for 40+ years, D’Olimpio Insurance. As of this past month, their business and income is gone. My mother has done all that she can on her own… she has made the house as handicapped friendly as it can be. Grab bars, chair lifts, wheelchairs, walkers, gait belts, monitors to listen for him when she needs to leave him alone for a minute or two… it’s all there. But all the accommodations in the world cannot help them live the rest of their life like this. Paul still has at least 6 weeks of daily radiation treatments to get to and a few more months of treatments that are experimental, at best, to treat the Opsoclonus Myoclonus. My mother cannot carry him in and out of the house on her own. She cannot be with him 24 hours a day, 7 days a week. Even with the help from our extended family, we cannot help with the financial burden of losing their business and the loss of any further insurance coverage for all that has already transpired and what the unknown will be as he continues treatments and needs 24 hour a day care for the unforeseeable future.

My father would give the shirt off his back to anyone. He has always been there for others and in the past few months, the amount of strangers and former customers that have told me how amazing my dad is and how worried they are for him has been nothing short of amazing. I want my dad to continue to fight and I want my family to have the opportunity to give him the best care that we can.

I always knew my dad was special. I would rather him be my 1 in 10 million than the 1 in 10 million taken over by this horrible disease.