Dear Gordon,
I was so excited when I came across your page! I've been searching for something like this for the past 4 and 1/2 years. My son Daniel had an
enucleation when he was 2 months old.
Our nightmare began when he was just a week old and our pediatrician referred us to a pediatric ophthalmologist because she thought there was a problem
with Danny's left eye (since birth).
After seeing a slew of specialists who were convinced that he had retinoblastoma, we traveled to Philadelphia to the Wills Eye Hospital.
They were the only ones who didn't think Danny had retinoblastoma, but
because his eye was severely damaged and his retina was detached they felt enucleation was our best recourse.
We were very fortunate in that Danny's biopsy, following the surgery, proved there had been no cancer, but it was
still heart-breaking that he had to lose an eye.
Looking back, I think it took me a couple of years to recuperate from the stress of
everything that happened. I often wonder how my husband and I made it though those weeks of doctors, hospitals and procedures.
Danny was our first baby and like most new parents, we weren't prepared for anything like
this. Throughout that ordeal, I remember thinking how I wished I could have find someone to talk to who had been through something like
this.
I often think that I would like to help someone benefit from my experience.
Maybe I could offer support to a parent who is going through something similar now.
I thank god that we didn't have to deal with cancer but my heart goes out to all the parents who have to deal with retinoblastoma.
I remember what it was like being told that Danny had retinoblastoma and being at Sloan
Kettering in New York City waiting for them to do a spinal tap on my 4 week old baby to see if there was cancer anywhere else in his body.
It was almost like I was living someone else's bad dream.
Danny will be 5 years old on Feb. 5, 2000 and he's a very happy little boy. We talk a lot about his eye now and although he understands a great deal, it
still breaks my heart when he asks me why he has one "real" eye and one artificial one.
Now that he has a little brother, he sometimes asks me why
Dylan doesn't have eyes like his and even after all this time it makes me want to cry. I can't help but feel like I would gladly give up my own eye
to give him back the one he lost.
I hope to correspond with other parents or people who have lost an eye or
maybe help someone who is going through this for the first time.
I would also love to talk to anyone who has suggestions on how to keep the
artificial eye lubricated since my biggest problem with Danny is trying to find ways to minimize the amount of build-up that he gets on his
prosthesis.
I'm constantly wiping at his prosthesis with mineral oil and a q-tip and now
that he's in pre-school I feel bad when I pick him up and he's got a lot of build up on it.
I worry that as he gets older other people will be
insensitive or make comments. I just read on the Internet about a self-lubricating prosthesis and I would love to know more
about it as well, so if anyone has any information they would like to share, I encourage them to email me.
My name is Violet Cuciti, we live in upstate New York.
Sincerely,
Violet Cuciti
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