So many people have asked if there is anyway we can help Nick and Joanie , so we decided to start this Gofundme for our great friends to help support and alleviate some of their burden.
Nick and Joanie share a beautiful life together with their 15 year old twins Nicholas and Gabriella and in July of 2016 everything changed for them. Nick was diagnosed with an inoperable Brain Tumor called Glioblastoma. Glioblastoma is the most aggressive Cancer that begins within the brain and the most common length of survival rate following diagnosis is 12 to 15 months with fewer than 3% to 5% of people surviving longer than five years. Nick was initially given 6 – 15 months to live but has been battling this horrible disease for almost 3 years now. In August Nick started his fight with great faith and positivity with Joanie at his side every step of the way , attending all his doctor appointments and coordinating with his clinical team managing his treatment options. Nick started his journey at Cornell in NYC undergoing daily radiation on his brain for 7 weeks along with taking traditional chemo drugs. Unfortunately, after these treatments his first MRI showed progression and he also developed hydrocephalus. He then needed to have brain surgery and a shunt was placed in his head with a tube draining into his stomach to allow the fluid to drain properly and alleviate pressure in his head. At this point they had to find another option for treatment and started looking into clinical trials all over the country. Nick and Joanie looked into so many trials and were denied many of the them because Nick did not exactly fit the criteria they required for that trial but were lucky to get into one at Sloan. He started treatment in December of 2016 and he had to go every two weeks for his infusions of two experimental drugs that would take approximately 5 hours to be administered each treatment in the beginning and then two hours thereafter. He continued this trial for about one year doing MRIs every 8 weeks and it was able to keep his tumor stable for that year until his MRI in December of 2017 showed progression which meant the treatment was no longer working. In January of 2018 Nick took another recommended drug that was newly FDA approved and was able to get another experimental drug on compassionate use. Nick also did another round of radiation on his brain which is not always recommended but Nick is such a fighter and was willing to try anything to be able to be here with his wife and children. His MRIs started to show some success at first but then after a few months the tumor started to show progression yet again. They then moved to Columbia where Nick participated in another clinical trial and after 8 weeks of going to Columbia weekly for blood work and treatment, his first MRI showed progression in his tumor again. Nick also started to develop symptoms of memory loss, right side weakness and confusion at times. In August they went back to Sloan where Nick started taking a combination of standard chemos and his symptoms began to worsen. His MRI showed more progression. Nick no longer was able to drive, started experiencing aphasia where he was losing his ability to speak or understand language and his right side weakness had now affected his ability to walk as well. Nick still continued to fight and started a different combination of standard chemo and did daily occupational, physical and speech therapy to try and regain all that he was losing. He was doing great for a while and these new drugs seemed to be working, but again only for a short time. The doctors advised at this point that the tumor was outsmarting the drugs, which is what happens with Glioblastoma. In December 2018 he had two back-to-back grand mal seizures lasting 3-5 minutes each and was hospitalized for 5 days. He was almost put on a ventilator but made a comeback again. He came home from the hospital with a smile on his face and still a fight in his heart and continued his daily chemo hoping for a turnaround. Unfortunately in February of 2019 he had another round of seizures and his platelets and white blood count dropped significantly low where he had to receive a blood transfusion. His symptoms worsened to the point that he could barely walk, was talking even less and was relying on Joanie to assist him in all day to day tasks. The doctor advised again the drugs are not working and are now doing more harm than good. His MRI in March showed that the tumor has now spread to his brain stem and is more aggressive than ever. Nick is now homebound and Joanie has become his full time caregiver which she does with all her heart and love she has for her amazing husband but it has become time that she can no longer provide the help that he needs on her own and has had to hire an aide to help. Nick can no longer walk or stand and his entire right side is now paralyzed. He is no longer talking except for an occasional yes or no answer and has a hard time understanding or taking direction.
Nick was the primary provider for the family and we know that he would want his family to be taken care of. This horrible disease has already taken away so much from Nick and his family, he will not have the opportunity to grow old with them and provide for them the way he would have wanted to.
If you know Nick and Joanie they are not the type to ever ask for help, but we felt we needed to do something for them and so many have asked to help as well. We know that anything you contribute is greatly appreciated and will help the Berlingieri family.
Nick continues to fight this battle everyday.
Thank you all for the support, prayers and love. We know how much they have appreciated those gestures over the past 3 years and will be so very grateful for this help as well.
God Bless the Berlingieri family.
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