Stephanie

Our profile for this edition comes from a family in Australia, our thanks to Stephanie for allowing us to re-print her story.

When my son was first diagnosed with XP we were not told, all in one go, a great deal about the disorder. Over the next few weeks we asked our Doctor many questions (as the mothers amongst you will understand ). During genetic counselling we learned that we could pass it on to other unborn children. I had planned a larger family. It was also in that meeting that I learned that this condition was terminal. WOW.

I can't remember anything else that was said during the rest of that meeting. You might say I was in shock. Instead of catching the bus home, I caught a taxi cab. Stunned but composed, during the journey home, the taxi driver tried to get a chat going. I only yes'ed and no'ed in the right places (I think?). Getting out of the cab the taxi driver said "Cheer up, nothing can be that bad." I paid and said "I've just been told that my 15 month only baby was going to die." You could see he wanted to crawl in a hole somewhere. I felt bad about that comment later. He was only being nice. He didn't need me dumping on him.

It was a good six months until I came out of shock. Each birthday we treasure, each Easter, each Christmas. We never know if it will be his last. It made long term plans a problem. What if we decided to do something in 3 months time (a holiday, a family wedding etc). We always said yes but .... our family knew we were worried that by that time, we may be having problem and may have to pull out at the last minute.

My son has been in and out of hospital many times since. Making decisions about his care was a crash course in trusting your instincts. We had only our Doctors who could advise us. We had no group to turn to. We couldn't speak to an experienced family about it. My son was too young, to ask his opinion about his care. We treated our Doctors as team advisers but we, as parents, we made the final decisions. We decided that we would 'sleep' on most decisions, then whatever we woke up with was the way we went. Even if we didn't understand the wisdom in that decision, at the time. Sometimes we went against what would seem more logical. Our Doctor commented on our method of decision making because in hindsight we often made the wisest decision without enough information that was needed at the time.

My son is now 24 years old. One Doctor said that he was surprised that my son had survived all he has been through. Our 'sleeping-on-it' method had indeed given him many more quality years than he (the Doctor) could have ever expected.

He first had a Squamous Cell Carcinoma (SCC) when he was 11 months old. They didn't diagnose XP then. He has had many KA's, loads of Basal Cell Carcinomas (BCC's) and I've lost count of the SCC’s since that first one. The main kind of treatment he has had is surveillance and excision of lesions. Often needing a skin graft or two. His eyes have suffered, too. His vision is particularly restricted with sun damage to the corneas.

Living Down Under, here in Australia, where it is a sunny and hot climate seemed to us to be the wrong place to stay and raise our son. We considered moving to another climate but the more we found out about XP the more we realised that wouldn't fix it. My son was on the WRONG planet. UV affects the entire planet. One of my friends wrote a short story based on my son. The story was about how God had 'messed up' and put this child on the wrong planet. We found the story very amusing. I've often thought about that story since.

Television doesn't seem to cause him any problems but fluorescent light strips give off UV light (as we found out by him being burned) so we do not have these in the home. One night we had a lightning storm. WOW. 'Natures fireworks', it was a brilliant exhibition. We all went out and sat outside and watched the night sky. Being night time Gaelon could go outside. The next day Gaelon was intensely burned which showed us that lightening was intense UV. Who would have thought it. We found out the hard way, as usual.

Gaelon is quite contented in nature and nothing much phases him. He has been on TV once or twice and Women's magazines have run a story or two about him. We found that locally beneficial because then the neighbourhood who were in contact with him knew what he was living with. The man in the local deli gave him a free ice-cream, one day after he had been on TV and another man in the Video Shop let him hire a game for free. The story touched their hearts.
Because Gaelon is obviously physically affected people are usually curious as to what the matter is. Gaelon usually just tell them that he gets skin cancers and the Doctors cut them out. That's usually all they need to know. Gaelon is very quiet and very shy. But when people get to know him, his humorous side often has them laughing. Being in the church we often have members join us in the home. He isn't shy with them and will race them around the block smashing everything in sight (on the Sony Playstation ). Gaelon also likes the games where there are puzzles, like in the game 'Silent Hill'. Because his eyesight is reduced, sometimes he needs me to read the frames in the games to him. The TV magazine writing is too small for him to see, too. So I photocopy that for him and make the print larger by sizing-up on the photocopier. He subscribes to the game magazine and the print in that is too small, too. Sometime his sister comes around and visits him. She likes reading the magazine too, and helps him with the games. She likes to play the games where I'll help, where he needs it, but I don't like to play the games. I leave that to them.

It struck me a few years ago that while Gaelon is living with XP, his XP affects so many people around him. Not only the immediate family (obviously) but how he opens the hearts of those who come in contact with him. One of our rellies came over for a visit from England. Before she came she said that she wasn't sure she wanted to actually meet Gaelon because she was afraid she would become attached to him, and find it very hard emotionally when he died. Of course she will, we understand that, so I said to her that she may never have a chance again and that her fear should not make her choices for her. I suggested that she let her heart open and learn to love unconditionally and when the time comes she could let herself cry, 'with us' not 'for us'. She came. She fell in love. She is glad she did. And up to now she hasn't had to cry 'with us'.

I've grown so much since he was diagnosed (when I was 22 years old). I must say that taking care of him has made me a much better person. Meeting mothers in the hospital with all sorts of problems has made for a very interesting a varied life. I may not have planned it that way, but when life hands you a lemon you may as well make lemonade. Gaelon Joined CanTeen. That is Teenagers with Cancer. There motto is "Cancer is a work not a sentence". I just loved that. Gaelon is LIVING with XP, to the max ( ... well ... as much as he can).

In memorian Gealon