[tri-med] Re: Sierra Update

Karen,
Thank you for replying.  You are always so full of information, knowledge,
and ideas.  The ped. doc ordered an abdominal sono for Sierra today and I am
going to go check out what Carey wrote.
Nicole mom to Alyssa 4 (going on 21, keeping me busy, and keeping my hair
from getting to long because I'm pulling it out), Sierra 2 1/2 (partial
trisomy 18 q, my brightest ray of sunshine on a gloomy day), Kobey 1 (true
mama's boy through and through, climbing, pinching, and loving), and Joe my
wonderful husband of 8 yrs. (without his support I would be in the funny
farm by now!)
----- Original Message -----
From: "Karen" <karens@xxxxxxxxxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Wednesday, October 22, 2003 10:12 AM
Subject: [tri-med] Re: Sierra Update


> ----- Original Message -----
> From: "Nicole Jones"
> >>  Do the docs regularly check Mari's kidneys and liver?
>
> Its VERY important that Sierra has regular abdominal ultrasounds -
> especially of the kidney and liver.
>
> Children with Trisomy 18 are at risk of developing a particular type of
very
> aggressive cancer called a blastoma. Specifically there is a known risk of
> Hepatoblastoma (live cancer) and Wilm's Tumour (kidney cancer).
>
> The risk is small (somewhere between 1% and 6%) but its still significant
> and the recommendation is that children with T-18 have abdominal
ultrasounds
> every 6 months. While wilm's is normally considered a childhood cancer the
> risk for T-18'ers exists until well into their teens / adulthood.
>
> While the cancer is aggressive its very treatable if caught early, and the
> best way of detecting it early is through the routine ultrasounds.
>
> There is plenty of literature around about Wilm's and T-18 these days, but
> if your doctor needs verification or background John Carey has posted an
> article on the SOFT US website (under professional articles)
>
> "I wanted a perfect ending. Now I've learned, the hard way, that some
poems
> don't rhyme, and some stories don't have a clear beginning, middle, and
end.
> Life is about not knowing, having to change, taking the moment and making
> the best of it, without knowing what's going to happen next. Delicious
> ambiguity."
> - Gilda Radner -
>
> Keep Looking For Rainbows!!
>    _--_|\
>  /Karen \
>  \ _.--._ /
>           v Karen, Mum to Alex (8 years, T-18 Mosaic)
> http://members.optushome.com.au/karens
>
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>
>

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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