[blindkid] Arianna's new battle

[Barbara Hammel]

I'll be pulling for her too, Rene.
I pray it's a successful surgery.
Barbara

If wisdom's ways you wisely seek, five things observe with care:  of whom 
you speak, to whom you speak, and how and when and where.

--------------------------------------------------
From: "Rene Harrell" <rjharrell at gmail.com>
Sent: Tuesday, April 07, 2009 9:59 AM
To: "NFBnet Blind Kid Mailing List,(for parents of blind children)" 
<blindkid at nfbnet.org>
Subject: Re: [blindkid] Arianna's new battle

> Janice,
>
> I'm so sorry to hear your news. While my daughter who is blind has been
> doing very well this year, my sighted two year old daughter has been 
> having
> a very hard year. She was born with multiple congenital heart defects that
> have all decided to "go wrong" at once and we've had to watch our  two 
> year
> old go from relatively healthy to the beginning stages of congestive heart
> failure in a matter of months. She's had two closed heart procedures in
> January and February and is now scheduled for open heart surgery at the 
> end
> of May and depending on how successful that one is, will be looking at
> another one in July.   We're not getting a lot of confident answers in 
> term
> of her long term prognosis because no one is really sure why this is all
> happening in the first place. But every time we walk into that pediatric
> cardiologist office, my quiet fear grows a little larger. And when they
> start talking about operation mortality rates, and short-term/long term
> mortality rates, my fear grows a little less quiet. Sometimes it feels 
> like
> your poor baby just can't catch a break, doesn't it?
>
> I hope you have a great support system of family and friends to help you 
> get
> through this. We'll be praying for you and Ari on Wednesday and for what
> comes next. I hope there are some people on this list who have dealt with
> childhood cancer will be able to chime in and give you some comforting 
> words
> of wisdom.
>
> Blessings,
>
> Rene in Colorado Springs
>
>
>
>
>
> On Tue, Apr 7, 2009 at 12:24 AM, janice jordan <jjordan_pa at yahoo.com> 
> wrote:
>
>> Some of you know that my little girl, Arianna, was born blind due to a 
>> rare
>> disease of the bones (osteopetrosis) and she underwent a then
>> experimental bone marrow transplant to prolong her precious life. June 
>> would
>> mark her 7th anniversary of success. She has been a real trooper through 
>> it
>> all. Well, today we received some not-so-good news during a routine
>> ultra-sound. They found a large tumor on her left kidney. We have a 
>> surgical
>> consult tomorrow and surgery scheduled for Wednesday to remove the tumor 
>> and
>> the kidney.  You have all become like family to me, to us and I felt a 
>> need
>> to share with the group. You all have helped me make some very important
>> decisions regarding her schooling, her social interactions and her 
>> general
>> well-being. Thank you all, for sharing with me and allowing me to make 
>> more
>> informed decisions regarding Ari's life. I look forward to lots more 
>> wisdom
>> and true-life experiences from you all.
>>
>> Janice and Ari
>>
>>
>>
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>
>
>
> -- 
> " I may not have gone where I intended to go, but I think I have ended up
> where I needed to be."
> -- Douglas Adams
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