I know that many of you have questions about Joe, his illness and the treatment, and I understand. I don’t expect anyone to blindly support a cause. Some of you already know Joe and his story, but for those of you who don’t, this is it. We’ve always wondered where Joe contracted this illness, how, and why. And actually, we just don’t know. We can speculate and even have some good ideas. It’s funny how no one wonders about those things with an illness such as cancer, that strikes indiscriminately, and with no reason. But in Joe’s case, his illness is rare and different, so people tend to ask. I don’t think it’s any different than cancer though, in the sense that science doesn’t know what triggers Sarcoidosis or why. And what makes Joe’s illness rare is that he is one of the unfortunate few that have it in his brain. What we do know is that Joe didn’t do anything differently than any other young man, and his illness has nothing to do with his actions. And I wonder, as the parents of any deathly ill child must wonder, if it was something I did or didn’t do or should have done, or said, or didn’t say. It’s a mystery. The most important thing for people to know is that there are young people that have Neurosarcoidosis that were, at one time, incredibly strong athletes, people that did everything right, and just like cancer victims, it strikes anyone. He never stuck a dirty needle in his arm, he’s not crazy, he wasn’t eating dirt or worms, he prays, and he is the most positive and kind young man you will ever meet. He doesn’t see things quite the same way as you and I and his focus tends to be on standing up, walking across a room, lifting his arms, and all the things most of us take for granted. Washing two loads of laundry will exhaust him for days. And if Joe stands up and shakes your hand, he’s expended more energy on that task than anyone who has ever shaken your hand and that simple task will leave him dizzy and nauseas. One thing I do know is that Dr. Nielson, who wants to treat Joe, is the first doctor who’s listened to everything I’ve had to say…and ‘everything’ can be traced back to birth. And not only does he listen, he gets it and it makes sense to him, and it all ties together in his mind…just as it does in my mind. Plus, he asks all the right questions. I’ve tried talking to local doctors about these things and they’ve cut me off mid-sentence or looked at me as if I were just another crazy mom. This is the just second doctor of dozens who had the sense to listen to me and listened carefully. Every detail was as significant to Dr. Nielson as it is to me. Believe me, I’ve remembered every glitch in Joe’s life and have wondered, at one time or another, if it was significant, especially since Joe’s illness is so rare. And the thing that is important about these ‘glitches’ is this; could these events be significant in Joe’s diagnosis and treatment? Could the past be pieces to the cure? One big question is this, when did this disease get into his brain? I guess it’s kind of insignificant at this point, because it….. just is, and that’s the biggest horror of his illness. It’s not been easy to watch. This is Joe’s story. I have to tell it because he doesn’t remember much of it. Jake, his brother, and I are his memory since his brain became affected. Joe has always been sick. Not seriously ill, but not well. It started when he was 7 months old and I started to bottle feed him. For 7 months he was infected in his ears, eyes, and throat. At the time we were military dependents and Joe was on a long list of ill dependents. So, they passed him off and gave him antibiotics..every kind…and sometimes these treatments would last for months. No one mentioned allergies; no one did much of anything except prescribe antibiotics. But after months of antibiotics, we would be back at the hospital literally days after the treatments stopped, and Joe would be infected again. After 7 months, Joe was released from military care and we took him to an ear, nose, and throat doctor in York. They put tubes in his ears and he was fine. He had tubes in his ears three more times before he entered kindergarten. He seemed to outgrow the
ear infections to some extent, but they were always severe enough to almost get to the point of tubes again, every winter. I’m telling you this because his doctors, the ones who listen and care, think that allergies and Joe’s baby illnesses probably have quite a bit to do with Joe’s disease and how it entered his system. When Joe was in high school he was spitting up every morning. Doctors said it was drainage from his sinuses, etc. No one seemed too concerned. But this is significant because I’m sure that his illness was infecting him then. Joe started to go downhill from there. Fast forward to a few years later, Joe was working in a poultry warehouse. He worked long hours and the work was very physical. He was thin and caught every cold or virus that came along. But I noticed that he was sick all the time and something wasn’t right. I talked to Joe and told him that I wanted him to quit, live with me, and work on his education and future. I knew he was sick then but couldn’t put my finger on it. But he got worse and worse. At one point, he developed a severe rash, one that almost killed him. His throat would swell and he couldn’t breathe, and it lasted for a week. I took him to see a doctor three times that week, and finally they injected him with prednisone, and it eventually settled down. As I look back, I’m sure his body was having a severe allergic reaction to his illness. And, at some point, his illness entered his brain. Joe was probably already sick and run down, and the hard physical work at the warehouse weakened him to the point that it entered his brain. And that’s when Joe’s health went to a whole different level and became a nightmare. He started to throw up all the time and was ‘out of it’ all the time. And the doctors said it was GERD and depression. Jake, his brother, and I knew there was something seriously wrong but all we could do was make sure that he was under a doctor’s care. We trusted the doctors and knew nothing about serious illness. I thought he was crazy, I thought he was bulimic, I thought he was stoned, and I just didn’t know. He just wasn’t ‘all there’ and he was spitting up all the time and he just couldn’t function at all. I decided to buy my house in York rather than Maryland, mainly to stabilize Joe in hopes that he would start to feel better. I thought that a stable environment would help….get him around his support network and his friends. I bought my home in May of 2004. On July 4th weekend of 2004, Joe came home with a severe headache, vomiting, dizziness, and disorientation. I thought that maybe it was a bad virus. By that Monday the pain was so severe that Joe just held his head, with his eyes shut, and rocked. All the family practitioners were closed due to July 4th holiday. I took him to the ER where they did a CT scan of his brain. They said he had chronic sinusitis and put him on a low dose of Bactrim, an antibiotic. He had a neutrophil count of 88…meaning 88% of his white blood cells were fighting an infection. By the end of that week I took him back to his family doctor twice and made another trip to the ER after coming home that Sunday afternoon and finding Joe incoherent and unable to walk. Joe was in a wheel chair at that point. I asked the ER docs if a sinus infection would make him this sick…oh yes, they said. They infused him with three IV shots of morphine for the pain and sent him home. The next day, a week after the first ER visit, Joe was in a wheel chair and was speaking gibberish. He couldn’t walk or speak. I called York ENT to have his appointment moved up, since Joe was so insanely sick, and that’s when they said that they looked at his CT scan and said that there was no sinus infection. I immediately took him to see his family doctor who put him on huge doses of very powerful antibiotics, orally. He never admitted Joe to the hospital. That doctor said that Joe was abusing his pain meds and that is why he was disoriented. As it turns out, Joe had meningitis, a severe brain infection, which went undiagnosed, and he was never hospitalized. Two months later Joe had his first grand mal seizure. He was immediately hospitalized. The first neurologist to ever see Joe called me at home and said that Joe was ‘mental’, before any tests were done. I asked him if mental illness would cause his seizure and he said yes. I asked
him if mental illness could cause his high neutrophil count…he said yes. Remember the first family doctor that said Joe was abusing his pain meds when he was in a wheel chair and incoherent. It turns out that he questioned Joe, in a separate room, when he was in a wheel chair and incoherent, the week of his brain infection, and wrote in Joe’s medical records that Joe was using heroine. I’m sure, knowing now that Joe had meningitis, that Joe didn’t even know what the doctor was asking. Joe never touched heroine, never, not once, in fact Joe was never a drug user. But it was in his records and he was apparently labeled a drug problem. It turns out that Joe’s initial WBC count was 37…normal is 8-10. In comparison, my father had a blood infection with his cancer and his WBC count was 23, and he never recovered. O f course, they saw his WBC after the initial neurologist had already decided that Joe was ‘mental’. Joe was in the cancer wing at York Hospital for 8 days. He had every test….even a lumbar puncture. They told me that his CT scan showed abnormalities in the gray matter at the base of his brain. They sent him home and his family doctor said they knew he was sick but couldn’t find anything and would see him back in a year for his yearly physical. No one mentioned the brain abnormalities again…at least not for years. Joe tried to go back to work. People in his life, not me, tried to tell him that he just needed to get off the couch and move…and he tried..and he lost his way many times and was always confused and was always sick. He ended up getting fired. That Christmas, he hiccupped for two days and then started to vomit blood. I took him to the ER and they pumped his stomach of blood and admitted him for another week. He had holes in his stomach from the high doses of antibiotics. His sleep apnea test showed that he had over 100 events every hour. They put him on oxygen at home. His family doctor did not want him on sedatives, even though his panic was severe, and we now know that it was because his brain was swollen and infected. She was afraid he would die in his sleep. I tucked him into bed with me every night, to make sure he was alive and breathing. He was totally bed ridden at that point. And this lasted for two years. Joe didn’t know how old he was, didn’t know where he lived. He would say, ‘mom, I need help’. Thank God I had good management and they believed in me and they allowed me to take all the time I needed for Joe because we had no other help. Jake and my parents took care of Joe every minute of every day while I was at work. One of his doctors told me not to take him to the hospital because they would only put him through hell and find nothing wrong. That doctor was sure Joe had Lyme’s Disease. Late one night Joe went to the corner store and didn’t come home. I was afraid to call the police because I knew he was physically ill and I was afraid that they would label him ‘crazy’ or a drug addict, and they would throw him in the mental ward or in jail. I knew Joe wasn’t diagnosed and I had no faith in the system anymore and I knew they would do something horrible. I was panicked for hours. My parents called several hours later and said they had Joe. He showed up at their door and said that he couldn’t find his house or his mom. Joe never wanted to take a shower. I couldn’t get him to bathe. One day I came home from work and Joe said, ‘Mom…I took a shower today’. I said, ‘Joe that’s great! I’m so proud of you’. He said, ‘Mom, I figured out how to adjust the water.’ I realized then, that he had been either burning himself or freezing himself with the shower temperature and didn’t know what to do. He didn’t know how to fix the problem. He couldn’t urinate. He had to concentrate on every simple task. I’d find him unconscious because he was aspirating his saliva and couldn’t breathe. That April of 2005 he had another grand mal seizure and spent another week in the hospital. Joe had blood clots in his lungs and pneumonia in his lungs. They said that it was from his seizure. A local neurologist visited Joe on a consultation and asked questions about his seizure. His conclusion was that
Joe was ‘bringing the seizures on himself’. He said that Joe was getting himself so ‘worked up’ that he’d have a seizure. I asked the doctor ‘what about his initial neutrophil count of 88’, and he replied, ‘I haven’t quite figured that one out yet’. At that point, I didn’t know about the WBC count of 37 and in retrospect, I’m sure he never bothered to look at Joe’s past medical history. He spent a ½ hour on Joe’s case and went back to his life. Joe was discharged with no diagnosis, no help. We found out years later, that during the hospitalization, Joe had a CT scan that clearly showed sarcoidosis in his lungs which is why Joe had the blood clots and pneumonia. Not one doctor followed up on the scan. Not one doctor ever mentioned sarcoidosis. I even took him to Hopkins to see a pulmonologist after the hospitalization, where his tests showed ‘chains of cells indicative of interstitial lung disease’. Not one local doctor followed up. After another year of being flat on his back, Joe had another seizure. At that point, his family doc wanted him to see a neurologist. This particular neurologist looked at Joe’s records and said, ‘He obviously had a brain infection. Didn’t anyone ever tell you this?” He said that Joe’s initial blood work and spinal fluid showed severe abnormalities. He said that Joe’s brain was damaged. He said that Joe had been on the wrong medicine for a year and finally put Joe on seizure meds. The Christmas of 2006, Joe seized for 4 days and we couldn’t get him stabilized. He was in ICU and with each seizure came a liquid dose of Atavan, right into his IV. Then hours later, he would seize again. This went on for days where Joe suffered about 10 grand mal seizures during those four days. He ended that hospital stay on seizure meds that would knock down a horse. Finally his neurologist called Hershey and referred him there. Of course, we tried Hershey on our own, and a walk-in patient doesn’t get the attention. A doctor must make the referral, and finally, we had a referral. On the first visit to Hershey his team of doctors suspected Neurosarcoidosis. Finally, after five years, someone had a clue! I never heard the word before. After numerous MRIs, CT scans, visits with pulmonologists and specialists, Joe was firmly diagnosed. An MRI showed that Joe’s brain was deteriorating and they immediately gave Joe chemotherapy which consisted of IV injections of 1000 mg/day of incredibly potent steroids to reduce the swelling and to stop his immune system from turning on itself. Joe’s steroid treatment opened the new Hershey Cancer Treatment Center. He could feel the steroids going through his blood and he could taste them. And I just want to say that watching someone come off of IV infusions of 1000 mgs of Solumedrol a day was one of the most horribly traumatizing events I’ve ever witnessed, and I can’t even bear the thought of what Joe went through. After his infusions, Joe was bombarded with oral doses of prednisone. He is now on a drug called Imuren, which is a cancer drug, which has the side affect of causing cancer. Joe’s doctors at Hershey certainly saved his life. Joe’s day to day life has improved since these treatments but his functioning is still about 40% of a normal person. At least he isn’t bed ridden anymore. Joe called me at work a few months ago and could stretch…put his arms behind his back and stretch…for the first time in eight years! He couldn’t stop talking about it. Oh Mom, he said, you just don’t know how good it feels to be able to stretch! Before that, he would try to stretch and he would fall forward into the fetal position and shake. Joe shouldn’t have to worry about the expense of treatments and he shouldn’t have to live on SSI for the rest of his life. The fees shouldn’t be a problem, but they are. Joe’s prognosis is not good. His teeth are completely rotted…and he never had a cavity growing up. And if his teeth are rotted, what’s happening to his bones? His disease destroys all his major organs. And the medicines destroy his organs as well. We are basically waiting for his liver, kidneys or heart to fail. Joe has central nervous system damage. He
doesn’t sleep and when he does, he has nightmares. He can’t walk more than 30 feet. He can’t lift his arms for more than 30 seconds. He falls all the time. And his immune system is so weak that a scratch can send him to the ER with infection. What’s the end point for Joe? We don’t’ know. How long is Joe going to suffer? We don’t know. But there is a doctor in California who wants Joe for a minimum of two weeks. He asked questions about Joe that no other doctor ever thought to ask. He wants to attempt to clear Joe’s system of the toxins and the fungus that have taken over his body after years of medications. He wants to build up Joe’s immune system with IV infusions. Maybe Joe can fight off this illness if we build up his immune system. I know that we can’t sit around and watch him suffer if there is hope. How do I know that this doctor is legitimate? I’ve researched him and his hospital and found only good things. I know people who know him personally. I didn’t find him in a phone book. It will be expensive, but to know Joe is to love Joe, and he’s worth it. If this treatment can improve Joe’s quality of life, it’s worth every dime and every effort. I’m losing my job at the end of December and don’t know where I’ll end up or if I’ll be working at all. So, we have a lot to think about. Joe hasn’t always been on Medicare and the cost of his illness has been staggering. Joe needs these treatments right now, immediately. He’s young and he’s tough and if anyone can beat this hideous disease, it’s Joe.