In 07/2008, two months before our wedding, my husband, Ray Welch (now 32) was diagnosed with Adenoid Cystic Carcinoma. This is a rare, relentless salivary gland cancer. There is no approved therapy/treatment for this type of cancer as it does not react well to any standard form of treatment. Being a rare cancer, it is not funded by the American Cancer Society and as my husband's treatment is not an FDA approved ACC treatment, rather an exact targeted therapy for his gene mutation, most cancer organizations will not provide assistance.
His initial surgery was two days after our wedding and was about 13 hours. He had a major reconstructive surgery of his jaw. He has now been battling this disease for 5 years. He had clear margins for the first two years after that initial surgery and radiation treatment. Right around that two year mark, we were told the cancer spread to his lungs and there was a spot around his collar bone (which he had surgically removed). We tried radiation and chemo; however, it did not work. At that point, it was a waiting game. The spots were still small, so we just monitored it.
We have now been advised that the cancer has spread to his rib cage as well as some to some lymph nodes around the liver area. Ray has been very strong through this entire process; however, one of his tumors has started to eat through one if his ribs causing him to be in extreme pain.
About two months ago Ray had his tumor profiled and was advised that he has two matched therapies available to him! This is wonderful; however, for two months we have been battling with the insurance company to get the treatment approved! The drug retails at $8,500/month! He will be on this treatment until it stops working. The tumor profiling alone was $5,800 and only a small portion of that has been covered by insurance so far.
We are still battling very hard to get insurance to cover this drug, but in the meantime, he is missing opportunities to play with his children and to enjoy every day life because of the pain he is in. At this point, we're just looking for any help for him to be able to continue on this drug during the appeal process.
The sad reality is, once this drug stops working, he'll need his tumor profiled again and we will start this process all over. This will be a never ending battle and the thought of an insurance company being the reason he will not get a drug that could save his life is unfair.
This treatment alone is $100,000 per year if we have to pay out of pocket. We're willing to accept anything and even $1 will help. We have never wanted to ask for help, but it's worth it at this point if it will save his life.
To all that donate; his children (Raegan (3) and Nick (5 months), wife Jen, and our entire families cannot thank you enough for believing that his life is worth saving!
Update: Now that this has gone far beyond our immediate friends and family, which I really never expected, I wanted to share a little more insight. Our family and friends know us, know our struggles, and have been with us through this entire process, so we stuck with the facts. Below is our entire story, for those who don't personally know us:
One day my fiance at the time, Ray, was at work. Something made him pick up the news paper that day. He decided to read the health section and there was an article about Oral Cancer. I got a frantic call at work and all I heard was, "I think I have cancer". We immediately scheduled an appointment with the dentist. He in-fact did have a mass in his mouth, where his wisdom teeth once were. They did a biopsy and we were given the diagnosis of Adenoid Cystic Carcinoma. At that time, the dentist said, "oh, it's okay. he'll have some skin removed and he'll be fine". We went on with daily life like nothing ever happened. Okay, he's got cancer, but he'll be cured of it here shortly....little did we know.....
We went to the specialist which we were referred to and were advised that it was a much different situation entirely. We were advised that he would need to have a portion of his jaw removed and replaced with part of his leg bone. This surgery was to be done immediately after our already scheduled wedding; therefore, we were blessed with an 8-day $400,000 honeymoon courtesy of our insurance company and the wonderful staff at University Hospitals. I did not leave his side. He had about a three month full recovery from that. At that point he ended up cancer free for about 2 years. In that time frame, we were blessed with a beautiful baby girl, Raegan!
Soon after she was born, we were advised that the cancer had returned and spread. He now had a spot under his collarbone and in his lungs. He went in to have the spot in the collarbone removed and a biopsy of the lungs. Indeed, the ACC had returned. He did radiation and chemotherapy; however, unfortunately, neither worked. The spots were small, so we just monitored them.
In the meantime, we were blessed with our baby boy, Nick. We went into the doctor's office after his follow up scan, while holding our two week old baby, we were told that it has spread, yet again. Treatment needed to begin.
We were told to try a clinical trial; however, he was denied from that as he did not have the right gene mutation. It took them two months to tell us he was denied. I decided I wanted them to profile his tumor. About a week later they sent it out for profiling. We were told there were two matched therapies, which is amazing!! This could be what saves his life; however, now his insurance company is standing in the way of him being guaranteed this drug. it has been denied and is now going through the appeals process; however, we have been working on that process for well over a month now. When we were told treatment needed to begin, he was not in pain; however, with all of the delays from the university conducting the clinical trial, delays from the doctor's office getting us results, and now the insurance company dragging their feet, one of his tumors has started to eat through his rib. He is in terrible pain.
He went from being an avid weight lifter, a very active individual, and a very involved father, to being someone who can hardly get around, can no longer play with his children, and cannot go one minute without being in pain. He has never smoked, done drugs, and has hardly ever even had a drink. It is unfair that an insurance agency can take someone's life away like this! He deserves to have the best chance at living a long, healthy life and I will do EVERYTHING in my power to give that to him.
He has worked through all of this, and many times putting in extra hours at work. He has been doing everything in his power to lead a normal life while beating this horrible disease!
We have now decided to take matters into our own hands. He will get that drug! We have graciously been given a donation to start the first two months of treatment, but these costs will continue to build. The unfortunate part is this is a cycle and once this drug stops working, we're going to be back in this same spot. Any donation you can provide, even $1 would be such a great help to keep Ray's fight going!
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