[blindkid] Arianna's new battle

Rene Harrell rjharrell at gmail.com
Tue Apr 7 14:59:32 UTC 2009


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.


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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