July 14, 2007 at 3:28 pm #15984lynnewestMember
Thanks for your support. Teresa, it looks like we have the same story to tell. I must admit I read some of the other postings talking about treatments & recovering from treatments and I feel a little jealous, since we never had the chance to consider any treatment. However, I try to remember that a life full of dread and wondering when/if cc will strike again, or spread into another area of the body has to be just horrible as well. Our sons sound so similar–athletic, health conscious, full of life. So unlike the many young people who abuse their health. That reinforces to me that Shaun was meant for other things. He told us in the hospital that he had always thought he would live a short life, which shocked me. However, in retrospect, when I remember how he lived his life with such gusto, I think he must have been trying to fill every minute with joy. Whatever that premonition was that he had, it prompted him to live life to the fullest, which is a lesson for all of us. My love and support goes out to you on this journey. Our sons are fine, it’s us that must find that “new normal” in our lives while we miss them so much. LynneJuly 3, 2007 at 9:41 pm #15983devoncatMember
Lynne and Teresa,
I can not imagine what it must be like to lose a child. You are both in my thoughts.
KrisJune 24, 2007 at 12:07 am #15982teresaMember
Lynne I feel so much of your sadness. Yes, we do get blinded by cc don’t we.
I too found this site after losing my son Alan in 8 weeks. (30/04/06) Yet another tall, slim and handsome strong athletic son. One who did motorcross, kickboxing, wall climbing, mountaineering and deep sea diving. Never drank alcohol, eat healthily and went to the gym. Alan had only ever had chicken pox and the mumps, plus a few stitches taken out in his whole life. I for one had never heard of cc and neither had any of my family or friends. I too feel that he did not get the attention of the doctors because of his youth and vigour and did not look unhealthy or have any bad habits.
My heart goes out to you. Shaun sounds as if he was a wonderful son.
love and light teresaJune 23, 2007 at 11:43 pm #533lynnewestMember
Having just passed the 2 month mark yesterday of Shaun’s death, today I find myself looking up information and trying to cope with the feeling of being absolutely blindsided by cc. I suppose that could be interpreted as healing just a bit, to the point where I can at least read about it and talk about it.
Yes, Shaun was diagnosed with ulcerative colitis when he was 14, and was later found to have developed schlerosing cholangitis, but we understood that the worse case scenario would involve a liver transplant. Shaun was an identical twin, so we were confident all would be well. We also were told that he stood a greater chance than the average UC patient of someday developing cancer. Last year he started getting regular colonoscopies & no concerns were noted. Then, in March, after about three weeks of back pain & generally not feeling well, he went to the doctor, was immediately sent for an ultrasound, and was admitted to the hospital. Our athletic, handsome son, a championship volleyball player & rugby coach, had stage four cc. We only had six weeks with him before he passed away.
It’s a blessing that I don’t feel blame or regret. It was so dramatic and quick, I am left feeling that there is no question he was only meant to be here for 24 years. However, I am puzzled as to why no one in the medical field thought to order a general scan along with his colonoscopy. Is cc really that rare? I’d like to encourage any person afflicted with Schlerosing Cholongitis for more than a few years to seek getting a scan of some type. We were told Shaun would need to start thinking about it after he’d had the disease for more than 10 years. Well, this marks year # 10 and he’s gone. I could tell his doctors were devastated. Perhaps this experience will save some other person, who because of their youth and vigor, doesn’t fit the exact profile of someone likely to succumb to cc.
My heart goes out to other people facing this horrible disease in their loved ones. I came to this site because I have had so much support these last three months and want to reach out, if I can be of any help to anyone else.
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