From Gilly.
One day while playing peek-a boo with my 18month old daughter I noticed that
she seemed to get very agitated when one eye was covered and not the other. I
dawned on me that she couldn't see very well, if at all, out of her left eye.
I mentioned it to her pediatrician at her 18month well baby check and he
agreeed that there was something "funky" about that eye. We were sent to the
opthalmologist (luckily we got a next day appointment), we were scheduled for
an EUA imediately. on 09 April 97 our Morgan was diagnosed with Bilateral RB.
We are a military family, stationed in Japan at the time, within 4 days my
daughter and I were on a flight back stateside.My husband had to stay in
Japan with our other two daughters,and wrap up things for an emergency
transfer.Luckily, we were sent to Los Angeles, to Dr. Linn Murphree. He and
his staff, the oncology people and everyone involved have been wonderful.
Going through the initial steps alone was very difficult, but my family is
together now and we are doing better.Morgan had an enucleation on the left on
the 7th of August 97, and is being treated with chemo and cryotherapy, the
right eye still has several small tumors and fluid under the lower retina but
our hopes and prayers are high.Morgan herself keeps us upbeat. She is still a
two year old in every way, happy and talkative.We are positive and we will
stay strong.I'll update as treatment goes on.I don't mind if you print this,
the other letters help me so I can only hope that mine can help someone
else.If anyone would like to talk to me about this subject I will do all I
can to answer any questions.
thegillys@hotmail.com
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