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ladywizz
New Member
United Kingdom
6 Posts |
 Posted - 07/17/2007 : 11:49:38 AM
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I know I was posting on the board with concerns for my friends child whom is just having a hickman line put in by the way to keep you all posted on that one...however...
I have just got back from the doctors with my 6 year old daughter with a worry of my own.
We took a group photo at my eldest daughters birthday adn they all had the normal "red eye" on it - apart from Sian. One eye was the usual red but the other was white. I took the photo with me and he said he wanted to rule out cataracts first and then said he couldnt see any but he wanted us to see an optition as soon as possible and recommended one. I got home and rand the optitions to book her in but our doctor had already done it!! Next I get a message to say they now have to test for a retinoblastoma. We see them on the 24th this month.
She is so happy and healthy! Surely this cant be happening?! Is it usual for things like this to happen yet a child be so narmally happy and healthy??? I knew the picture wasnt normal but I certainly was not expecting to be told this.
Any info would be most appreciated right now. the 24th seems such a long time away after you have just been told your kid might have cancer! |
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TannersMom
Gold Level Member
USA
464 Posts |
Posted - 07/17/2007 : 1:17:21 PM
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I'm not sure what the lack of red eye could mean.
If it does turn out to be Retinoblastoma there are some centers who are doing groundbreaking therapies where they put chemo straight into the eye instead of the whole body. I tell you this so you can make sure to check out ALL your options if it happens to be this.
Best wishes, Megan |
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duncansmomma
Platinum Level Member
USA
565 Posts |
Posted - 07/17/2007 : 2:17:01 PM
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Hi,
I am so sorry that, by a stunning turn of events, you are facing some of what you were trying to help your friend through...
I will say to you what we told you to tell her and that is, don't worry about what you yet dOn't know. You have done absolutely correct and right by your daughter to seek immediate medical help for her because of your instincts and what you saw in the photo! That is very important! Good job! Now, unfortunately, you must wait for tests and more information. That is a very hard thing to do but I know you can do it.
True, the strange eye shadow photographic phenomenon can be a sign of retinoblastoma but it cana lso mean many other things. I would think that the odds are in her favor in that she seems a little bit old for a retino diagnosis if I remember my data correctly...
I am hopeful that it is simply something else less serious, but, if it is not, you can get through it -you already proved that by supporting your friend so well in her time of need, and we will be here to support you!
Best of luck!
Christine, momma to Duncan, 3 yrs. old, stage IV HPB -dx 9/22/05, one year cancer-free and counting...Current AFP, 3.6 |
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conor
Silver Level Member
129 Posts |
Posted - 07/17/2007 : 5:38:46 PM
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I don't have anything specific to add just to back up what has been said - try not to jump ahead of things - wait and see what you are dealing with first. It is easy to get on the internet etc and read all sorts of things, some of which will scare you, some of which will put your mind at ease but firstly you don't know what it is and you don't know what data is accurate etc. So as best you can, be prepared, and as hard as it is be patient, and please let us know when you get some further answers. Sending some thoughts your way while you are waiting.
Sally |
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PrayforLindsey
Gold Level Member
USA
287 Posts |
Posted - 07/17/2007 : 11:53:45 PM
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Yes it seems like a long way away when you are told you child may have cancer. The truth is any amount of time is a long time. We were told our child may have cancer and we had to go back the next day and I thought that was way too long. I don't know much about retinoblastoma. I know there is a lot of info on the internet but sometimes you can have too much information and it can scare you. We pray it all turns out well for you and pray for you and your family.
Kristen
Lindsey Diagnosed Stage III September 8th 2006, Resection December 12th 2006, Remission Valentines Day 2007 Current AFP 3.5
Please view updates at www.LindseyAnn.net |
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sunnlight
Administrator
925 Posts |
Posted - 07/18/2007 : 3:10:26 PM
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I give you and your doctor a lot of credit for your concern and dilligence. We were just discussing how childhood cancer can go undetected on teh HPB thread...
ANYWAY, honestly, the simplest explination is usually the correct one. This is NOT to say that you shouldn't be concerned...you HAVE to rule everything out.
I am sure you have been all over the web. Ifound a good site for you:www.orphancancer.org/ORbIT/leukocoria.html
It talk's about the "white eye" aka cat's eye and what it can mean. Cancer is NOT the only reason. And if it's the first time, it could simply be a camera issue.
Who are you seeing on the 24th? A pediatric eye doctor? An oncologist?
Thank you for shring with us-and my prayers are with you.
Stacey, Mommy to Ryan, dx stage IV 6/19/2002; 4 years cancer-free and counting! |
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PrayforLindsey
Gold Level Member
USA
287 Posts |
Posted - 08/03/2007 : 11:43:13 PM
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How did the appointment go?
Lindsey Diagnosed Stage III September 8th 2006, Resection December 12th 2006, Remission Valentines Day 2007 Current AFP 3.5
Please view updates at www.LindseyAnn.net |
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Topic |
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Retinoblastoma
