Volume 9 Issue 1
Article 17
Colorado TM Support Group Danise and Lamar Burkes moved to Texas and Kevin and Barbara Hession are taking over leadership of the Colorado Support Group. Thank you, Kevin and Barbara! A Journey Nothing about this disease is easy. It’s absolutely the hardest thing I’ve ever been through in my life. But I am one of the lucky ones as my son has recovered with only some minor symptoms. My husband was killed in 2000 and then there was 9-11. My mother had a heart attack and my oldest son was diagnosed with a very serious disease. In June, 2006 my sister committed suicide after having a stroke and on Kevin’s birthday. But nothing, absolutely nothing prepares you to see your child lying in ICU in a coma and no one knows how to heal him. In the 39 years you’ve raised him, protected him, nurtured him in any way you could; nothing prepares you for the journey you are about to undertake. I had to stand by and watch my son and know there was nothing I could do except to fight for him. It was out of my hands. Only G-d knew what would happen to him. I was afraid. I felt I couldn’t let anyone know how scared I was. There is little known about ADEM. It seems to affect each person differently. My son, Kevin, was 39 and had never been sick in his life except for an occasional cold. He had his whole life ahead of him. He had dreams of things he wanted to do and then suddenly one day… poof - those dreams were gone. Kevin had done so much already in his short life. He was the manager of the hockey teams for Bemidji State University and the University of Minnesota. He coached the Bantam team of the University of Denver and also worked as an off-ice official for D.U. At the time of his illness he was a realtor and, in fact, had worked as such the day before he became ill. He had traveled all over the world and loved what he did. He was not married and only had his dog and his home to take care of. Our experience began the first part of September, 2006. Kevin was not feeling well and was being treated by his physician for a sinus infection with Augmentin. On September 12 he asked me to drive him to the doctor’s office because he didn’t trust himself to drive. I worked a block away and by the time that I arrived there he could hardly walk or talk. Kevin is 6’8” tall and weighs over 300 lbs. I was unable to help him. I called my boss and she came to help me get him to the doctor. The doctor told us to take him to the ER. He had no idea what was wrong with him. We took him to Presbyterian/St. Luke’s Hospital here in Denver. They had no idea what was wrong and thought it might be dehydration from the infection. They wanted to keep him overnight and do a CT scan. By the next morning, he was unable to communicate. An MRI was performed. They suspected vasculitis. This was just the beginning of a long string of diseases he was tested for, each one proving wrong. We were very lucky to have an intern on the case who never gave up. He was constantly doing research and was the first to mention ADEM. I called my retired physician to ask him to come by and take a look at Kevin. He called back and said he thought maybe it was ADEM. He had a friend who had had it and the symptoms were very similar. Within a few days, Kevin was in a coma and transferred to ICU. Over the next month, he was tested for everything from A to Z and more. He was seen by upwards of 40 medical personnel. It seemed to be one doctor after another. He was catherized, had a trach put in and a feeding tube was inserted. He had numerous MRI’s, CT Scans, lumbar punctures. There was a brain angiogram and tube after tube after tube of blood drawn. Still nothing was showing conclusive. They administered IVIG, plasmapheresis, massive doses of steroids and they were considering Cytoxan. There was also a possibility of a brain biopsy which might give them an accurate diagnosis. Kevin’s neurologist spoke with a physician at the Mayo Clinic in Phoenix, AZ and he said he thought with everything that had been done they might be on the right track. In only a few days my entire life had once again turned upside down. I worked every day and also ran to the hospital every day to see him. On my way home I would stop at his house, check to make sure things were ok and take his dog home with me. I already had one small dog of my own and the two became great friends before Kevin got sick, but now they were getting even closer. Sometimes I would go back to the hospital to just sit beside his bed and ask G-d to keep him safe and not to let anything happen to him. He had so many friends who called constantly and once the diagnosis of ADEM was suspected, they all began their own medical research. It soon became clear that the only way to keep in touch with them was through e-mails. I never thought I would appreciate the computer so much. His older brother had become disabled earlier that year, because of diabetes and I would take him with me to just sit there. Nothing ever happened, but at least we were all three together. On the days when I had a chance, I would check in on my mother who was in a nursing home; I was her caregiver. I never knew I could wear so many hats. I knew I had to be as strong as I could be and take care of all of us. Kevin was just getting ready to draw up a will and power of attorney before he got sick, but never got to it. Since I was now taking care of all of his financial issues, I needed to get a power of attorney. I contacted our attorney and we went before the Magistrate and I had to be made conservator and guardian. Once that was done, all the paperwork had to be sent to the different companies that Kevin did business with. I had to get in touch with Social Security and set it up so that he could receive his benefits. I need to tell everyone that one of the best things you can do when things like this happen to you is to keep a daily journal of everything that happens; events and drugs and doctors. You will not regret it. On October 4th, a brain biopsy was done. A small part of his brain was taken out and sent to the lab. The hole was covered and four tiny titanium screws were inserted. Now he tells me when he has problems, “Well, Mom, guess you’ll have to tighten my screws again.” The specimen was sent to the lab and it came back with a diagnosis of ADEM. With that the doctors began treatment as best they could. Kevin was transferred to Select Specialty Hospital in Denver on October 7th. They had put in a pick line for his IV’s and meds, which led to blood clots and now the doctors were less optimistic about his recovery. They wanted to start him on Cytoxan. I knew this was a drug used for chemotherapy and something told me not to let them do this. I spoke with his physicians and asked them not to give it to him for a while and to see if he could somehow start to fight it on his own. They agreed. Soon he developed nystagnus from the Dilantin he was put on and the doctors gave him a new med to counteract the rapid eye movement. They wanted to put in a G-tube but it was too hard to do and they felt they had to operate to put it in. But again, they decided to hold off for a while. No one seemed to know how to continue to treat him. He was getting one infection after another and then they put filters in his legs for the blood clots he kept getting. On October 22nd, he started to rally. I asked his physician if we could hold off with the Cytoxan for a while to see if he could fight some more and maybe recover on his own. She agreed and the decision was made to hold off with Cytoxan for a few days. He began to rally and surprised everyone. He couldn’t move or talk or do anything for himself. He lay in his bed for days on end, but the therapists would get him going. He was constantly doing the therapy they gave him. He did develop a few urinary tract infections, but they were treated and went away. Most of his days were spent lying in bed watching TV unable to move. Everyone was amazed at how well he was doing and on November 27th he was transferred to Spalding Rehabilitation Hospital. I tried a couple of times to get him into Craig Hospital, but they weren’t able to take him. He again layed in bed and daily he received physical therapy, speech therapy and occupational therapy. He was now able to sit up in the wheelchair and watch TV. Once his trach was taken out, it was discovered that he could speak. He had not lost that ability. He had trouble reading, but he never forgot anything. He was having bowel and bladder problems and that was something they would work on down the road. Spalding worked with him to teach him to eat. For the first few days he was unable to feed himself. Kevin had some problems with depression, but he would work through them. We all knew he would be ok through hard work. It was his nature. We knew how hard he worked as a hockey player and he was bound and determined to work that hard again. On January 11, 2007 he was transferred to Monaco Parkway Rehab and Nursing Center and this is where he began to improve. Within a week he was walking with a walker. His determination was so great and nothing could stop him. He decided he would get better and he did. He received speech and occupational therapy and improved by leaps and bounds. They had to teach him math again and many other things he had learned in school. They also taught him time. To this day, he still has a bit of a problem with his math and his time, but it is continually improving. During all this time I had to continue to take care of his finances and I had to put him on Medicaid. I had to spend down everything he had. That was one of the hardest things I’ve ever done; knowing that I was making my son destitute. He had worked so hard to get where he was and suddenly it was gone. I only hoped he would understand and forgive me. Thank G-d, I raised a very forgiving man and, yes, he understood. I have recently had to put my other son on Medicaid and also my 88 year old mother who is in a nursing home. It was a lot easier, either because I’d done it before or because I just wouldn’t let it bother me any more. Kevin came home on March 23rd to live with me. The only problems he still had were his time and his math. His biggest problem was his right hand. I think over time that he will get full recovery. He was given braces for his wrists and for his feet to be worn at night. After he returned home, he went back to Spalding on a daily basis for more therapy where he continued to recover. He took Access-A-Ride every morning and did very well by himself. I would pick him up every night after work. On June 1st, he began going to C. U. Health Sciences for more therapy. He started on a daily basis and gradually he went two or three times a week, then twice a week and then once a week for quite a while. They treated him with warm water therapy and he loved it. They also made new braces which he still uses to this day when he goes to bed. We talked to a hand specialist there and she said she would not do a tendon transfer on his right hand, the bad one, and the dominant one. She felt it was a temporary solution to a problem. When Kevin went to see her this last fall she was very pleased and said he should just keep up his hand therapy. She felt he was very ingenius in that when he was there she told him to get some heavier weights to work his wrists with and he went downstairs and got his dad’s heavy tools and used those as weights. By the end of summer 2007, Kevin was mowing my lawn and doing a very good job. He worked so hard getting done what he needed to do. He still has a couple of deficits, small though they are, but I want everyone to know that it can be done. He is back as an off-ice official for the University of Denver Hockey team. He can’t drive yet, but I take him there and a friend brings him home. One of these days I know in my heart that he will be back on skates and we will be hearing him gliding down the ice. I did take him back to Select Hospital when he recovered to see the nurses and doctors, because they were so wonderful to him. They always said they would one day see him walk off the elevator on his own. Well, he did that and they were so surprised, it made the tears flow. They all said that they were glad to see him in a vertical position since the only position they had seen him in was horizontal and they didn’t realize how tall he was. Every one of them said they knew he could do it. I learned a lot through all of this. I knew my son was very strong willed and that he could do anything he set his mind to and this is proof that it can be done. Kevin is proof that there can be recovery, although it is a long, hard journey; one that you cannot give up on. We know that all the prayers that were sent out for him helped him through it all. He was the recipient of many, many prayer circles. His friends helped me a great deal and some of them continue to this day to make sure they come to see him. They know how much it means to him. Keeping in touch is one of the things that helps the most. Letting them know that someone really cares about you; that they will help in any way they can, even if it’s just with a small prayer. I thank G-d every day that I have my son back. We have been in touch with other people with ADEM and have found that each has suffered in different ways. We are pleased to take over the support group in Colorado. We decided that we needed to do something to help others. Please feel free to get in touch with us and please think about getting involved. Barbara Hession |