Sometimes, when the darkness comes and you feel your world crumbling down around you, a sliver of light makes its way through the cracks of your life. The past month has been a huge struggle for me and my husband. Not only has he seemed to have gotten noticeably worse, but financial burdens have become overwhelming, our kids have had some personal struggles, and the pressure to remain strong and keep life “normal” for everyone has become harder for me. Then, on May 18th, my husband was brought to the ER by ambulance once again. He had been vomiting on and off for days, thought he was better, and then started all over again. We thought he was septic again. This was not a new thing for us…we had been down this road several times before.
But, this time was different. He went to his usual hospital, where they knew him and his history. They discovered he wasn’t septic, but possibly had a blocked intestine from his tumor growing and squeezing it shut. A doctor came into the room and said that she felt he would be better off going a few blocks away to Smilow Cancer Hospital. She felt he would be able to get tests over the weekend, and that there may be doctors there with more expertise. So, we agreed and he was transferred. It was one of the best decisions we’ve ever made regarding his treatment in the last 11 years. It changed the trajectory of his treatment and gave us some hope we haven’t had in years.
Dave stayed in the hospital for 5 days, and came out looking and feeling like his old self. The difference? He had a different doctor who decided that since his disease is essentially an overproduction of inflammation (in a very basic nutshell), that they should put him on steroids and see how he does. The result was nothing short of amazing. He felt better physically with less pain, and his head cleared and he was able to think more clearly. He was more awake. They released him on Tuesday, with a referral to a doctor who specializes in rare diseases. That doctor happened to be in the SAME practice as the doctor he has been seeing for the past 5 or 6 years. We have no idea why we were never told about him.
Last week, he had his first appointment with the new doctor and he has given us more hope in one visit than the other doctor has ever given us. The new doctor is already treating another patient with Erdheim-Chester Disease in the same practice. He studied under a doctor at Sloan-Kettering and a doctor in Boston who both have experience in treating ECD. He started my husband on a new medication, has a brand new plan for him, including monthly visits, scans, and testing for a gene mutation that could change the course of his treatment in a positive way. The hospital also gave him other resources to help him and the family. In 11 years, we never knew any of this existed. One trip to the hospital, for what we thought was just another hospital stay with some sort of infection, turned out to be a blessing in disguise. We had the right doctor at the first hospital who questioned his lack of current treatment, who sent him to a specialty hospital, who had the right doctor on staff to lead us to a completely different doctor with a much better plan.
Life is still a struggle, and the illness will always be there. We’ve watched as my husband slowly deteriorates, not knowing what to do or where to go. Just when you feel as if life has kicked you so hard that you don’t want to get back up, the right people, in the right place, at the right time, enter your life. And everything changes. We don’t know yet what the outcome of all of this will ultimately be, but we feel hopeful for the first time in a long time. Sometimes, that’s all you need to get you through.