So, I look terrible today. My hair is in need of a colour and I've got no makeup on. Of all days, today I decide to do a video blog. I think the 41 degree heat has cooked my brain. Anyway today it was time to go to genetic services at King Edward hospital for Ashton to be tested for the Cowdens gene. She took it in her stride and I suppose it's done now and all we can do is wait and see. A positive result changes nothing , but would finally give a reason why the fistulas grow so rapidly. A negative result leaves a reason for her condition still a mystery, but means her risk for all the Cowden's related issues remains the same as the general population. There is no winning here.
Ten days to her next surgery. We are keeping busy and trying to laugh lots. Making these videos helped.
Nine weeks of waiting for a result! Oh well
Till next time...xxx
PS It took me absolute hours to work out how to upload the videos. Hope the links all work. You see...you can teach an old dog new tricks. Off to the hairdresser. Have a lovely day xxx
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Thanks for making me jealous of your ice cream! Brat 😜 It looks soooo good and I'm starving for we haven't had dinner yet. lol
ReplyDeleteYou are braver than I in doing a video blog... I'm terrified to do one... lol But then again you have always been braver than I am because you will talk about your disease and all that is going on. With not only yourself but your daughter as well.
It was great to see you both via video and get to know a little about your personalities. Your daughter obviously takes after you as she is facing all of this uncertainty with her Mom's bravery for sure!
You are both in my prayers often but even more now as you await the test results... What an extremely long time to wait for test results though. Why does it take so long... The waiting would kill me!
Much love,
Lysa xx
I wish it were a lot quicker bit as Ashton has big surgery next week we have a distraction.
DeleteI love this! I love these videos! I love seeing you and your daughter. So, she is the one who has the brain surgeries? Is that the fistula things? Man. What a cute idea these things were. I didn't get a chance to watch them all but I loved them! May I ask how old she is? Not 18? That's why you left it up to her to decide when to get tested for the PTEN gene? Have any of the doctors ever mentioned gangliocytoma or Lhermitte-duclos Disease?
ReplyDeleteI may see about doing one of these possibly. :)
Heather they were fun and the ICECREAM was awesome. Ashton is 21 in three weeks. She hasn't got the conditions you mentioned. Fistulas are AVM's not tumours. Her next surgery is next Friday. We are all anxious but want it over and done with. She is a tough kid but needing emotional support at the moment.
DeleteWish the best to you daughter on her test, and thanks for sharing it, it is absolutely lovely watching you together in this video.
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