After 26 years of ALS, Erin battles stage 4 cancer

After surviving 26 years with ALS, Erin now battles cancer for her life.

On September 7, 1994, after many months of symptoms, I was diagnosed with ALS (amyotrophic lateral sclerosis or Lou Gehrig's Disease) and given three years to live. I was 36. My husband, Curry, and I were devastated. We had wanted a child for six years, but it had never happened. A few months after my diagnosis I started feeling sickly. We thought it was the ALS, but it turned out to be Daniel Curry Worsham, who was born nine months after my diagnosis! (My FIRST neurologist wanted to know if I had done it on purpose and wanted me to terminate my pregnancy. I got a SECOND!) When I found out I was pregnant, I made the decision to go on the ventilator when the time came, so I could watch our child grow up for as long as God willed.



I am married to a very special man in Curry Worsham. He gave up everything so we could be a family. He took care of Daniel and me for the first few years, with the help of a sitter at night who could wake him up if either of us had a problem. I went on the ventilator in 1997 and within a year the wonderful Tennessee Justice Center had gotten us some nursing care from the state. This allowed Curry to sleep at night and work during the day. Then he took over until the nurse came at 11 p.m. He also covered any time the nurse was unable to come. 



Those were happy years watching Daniel grow up. Curry took us everywhere, both before and after I went on the ventilator ...Festivals, parades, puppet shows at the library, art exhibits, the State Fair, Shakespeare in the Park and Whitt's Barbecue Wednesdays to name just a few. Whitt's always had their sandwiches on sale on Wednesdays. We would pick up an early dinner and take it to the park where Daniel could play. I'll never forget the day when little Daniel was playing with another little boy and he asked him if he wanted to meet me, his Mom. He took one look at me sitting in my wheelchair and breathing with a ventilator and ran the other way. Daniel called after him, "She's a nice girl." I think that was a hard lesson for Daniel to learn, that his Mom wasn't like other Moms.



There comes a time when Mom and Dad are no longer cool, if we ever were, and your child wants to hang out with his friends. We retired to our mutual interests at home. Over the years Curry has developed a beautiful garden in our enclosed backyard. Our backyard Is called "Cardinal Cove." We love to watch and feed the birds. We find such peace in the garden and yard... Well, our miracle child will soon be 25. He and his cat live in Knoxville and he works as a film booker at the corporate headquarters of Regal Cinemas. Little did I know when Daniel and I watched "Mary Poppins" a million times, we were actually training him for the movie business!  God has truly blessed my family.



That brings us to the cancer. In September of 2018, Stage 3 cancer was discovered in my colon and removed. My wonderful surgeon, who I really like, thought he had gotten it all, but even a single cancer cell can wreak havoc. And it did. The years of ALS had made my body too fragile to tolerate chemotherapy. The cancer returned in a year and a half. In the process of trying to figure out what was going on, I had a CT scan, a PET scan and a liver biopsy. The PET scan revealed that the colon cancer had metastasized in my liver and the biopsy confirmed that. My oncologist pretty much gave up on me immediately. Her only option, which was communicated to us by her nurse practitioner, was palliative care (i. e. Hospice).



We decided to get a second opinion from Vanderbilt-Ingram. The 20 doctors that looked at my PET scan agreed that the cancer had metastasized in my liver, but they also suspected that there was cancer in the soft tissue around my colon. They wanted me to wait two months and then do a PET scan of my brain and entire torso. I was baffled. They wanted me to wait two months and give the cancer a chance to grow and spread? Just the fact that they have already scheduled me for PET scans of my brain and torso tells me that they are at least entertaining the idea that in two months the cancer could spread to other parts of my body. I understand why they want to know if the cancer is anywhere outside of my liver. If it is only in my liver, they could do targeted chemo (TACE), which goes directly to the liver and doesn't have the side effects as chemotherapy. But giving the cancer time to get the upper hand in my body is unconscionable. In a way, I feel like they have given up on me, too.



Our good friend and Daniel's godfather, Steve Tolman, told us about Dr. Stephen Cantrell (NeoPlas Innovation). He had his own battle with cancer some 18 years ago and was given a limited time to live. He experimented with two drugs that were FDA approved, but not for cancer, and the cancer went completely away. I believe he still takes those drugs to maintain. We went to see him in person. Curry, my nurse and I had a wonderful meeting with him. He was not the least bit bothered by my complete immobility in my wheelchair or the ventilator allowing me to breathe. Dr. Cantrell sees no reason why I can't take these drugs and we'll soon see if I can tolerate the side effects. He said he would never give up on me, whether I work with him or not. The doctors pretty much gave up on him when they gave him that limited time to live, so he's not about to give up on me.



Good People, I am open to this treatment. The sticking point for Curry and me is that, though the drugs are covered, the treatment is not covered by insurance. I can't believe God has gotten us through all these years of ALS only to have me throw in the towel when this devil cancer comes along. I feel like God wants me to fight for my life. And so we come to you, Good People, known and unknown, in all humility to ask if you can help me fight... Lord Jesus, You gave us the incredible miracle of the gift of Daniel all those years ago. Dare we hope for another miracle, Lord? ... Can you, will you help?