mike-

thanks for writing back. my wife also had retinoblastoma with enucleation of one eye. she was treated in nyc, back in the late 1950's. we knew of the chance with kids and both were screened at birth. paige was diagnosed on a check under anesthesia at six weeks. she was treated with cryo, laser, radiation, all kinds of tx. her eyes remained clear. when she was diagnosed, we were told that they wanted to do surveilance ct scans on her. when we asked what for, they said brain tumors. we were floored.

it seems that they had discovered that in rare cases, a pineal gland tumor was associated with bilateral. we didn't even know there was a chance of that when we decided to have kids. paige was diagnosed with tri-lateral at eight months and immediatly began chemo. she was on chemo for 18 months and had a recurrence. she then underwent cranio-spinal radiation tx and subsequently, a bone marrow transplant.

tri lateral is very rare, but we were furious with a newsletter put out by one of the support groups. they told us that they would not publish any input from us "so not to alarm other parents". we were pissed to the max. a forum on the disease would not allow us to speak, not to mention pass on critically important information to other parents. i honestly wonder how many children died because of their stupidity. they believed supression of this information would be better than educating people. may these arrogant bastards rot in hell.

after the bone marrow transplant, paige recurred about a month later, and died in the next month. retinoblastoma can kill. people need to know that. and i'm incredibly angry that it is being suppressed by the people with the power to do this.

i must stress that this is extremely rare. at the time paige died, there had been only 60 or so documented cases of this. she was treated at Duke university by Ed Buckley for bi-lateral and by Henry Freidman for tri-lateral. Dr. Buckley is one of the top u.s. authorities on bi-lateral, and even fellowed under Dr. Ellsworth in nyc, who treated my wife. Dr. Ellsworth was one of the first in the u.s. to have success in treating bi-lateral. Dr. Friedman is the (and i stress this) ONLY authority on tri-lateral. He may not treat all tri-lateral patients, but he writes all protocols for tx of this disease. he is also one of the main authorities on pediatric brain tumors in the world. he has his own lab at duke and does research 24 hrs. a day.

the thing that i want to get out to people is that tri-lateral is rare, but it does happen. if you have a child with bi-lateral, they MUST be scanned for this possibility at regular intervals. i don't know about unilateral. we tried to get this information out through the newsletter, but were rebuffed, and we were so busy trying to keep paige alive that we didn't have the energy to fight with stupid people over their stupid actions.

you or anyone else can email me at shooter31@aol.com. i will answer any questions i can, and refer to others those i cannot.

in closing...."A little learning, indeed, may be a dangerous thing, but the want of learning is a calamity to any people." -Frederick

Douglass

Sends some Email. to shooter31@aol.com

Dear mike and friends -

I am Bill Hall's wife, mother of Paige Hall who died 3 years ago of trilateral retinoblastoma. My husband has already summarized some of what we went through with Paige. I had bilateral retinoblastoma and was very fortunate to be in NYC where I was treated by Dr. Reese and then Dr. Ellsworth at Columbia Hospital. I had external beam radiation and one eye enucleated. SInce then I have been healthy with no occurance of any other maliginancies. There is not much research on us old farts since I am now 40 and of the first generation to survive to adulthood. What research there is does strongly recommend careful screening throughout life for cancer.

I think it is important for parents to know that among other things that have been studied about us, retinoblastoma survivors are generally of superior intelligence! Aside from the usual difficulties encountered in growing up with a physical difference, my childhood was not much affected as I had adequate vision in my remaining eye. Doctors then were not aware of the implications of other cancers in RB survivors and I was lucky not to get anything that needed alot of tests and follow up. However, I would urge parents of RB children not to rely on luck.

When Paige was diagnosed with trilateral RB it came as a total shock and I felt very guilty since I thought I'd kept myself current on all the latest treatment techniques, etc. However, you can't ask a question if you don't know where to start. I would urge parents to request consideration of CT scans and talk to their doctors about trilateral. It has not been fully documented, but it appears to be more common in children with RB who are second generation - the RB mutation becomes more lethal in subsequent generations. This is important for your children to know as they approach child bearing years. The Retinoblastoma Newsletter had an article from a parent who had RB and had 2 children with RB and one "clean" with no mention of careful consideration of the implications of RB surviors having children with more lethal forms. As more of us survivors have children more will be learned I'm sure. In the meantime, we were very frustrated by the newsletter's refusal to mention trilateral for fear of upsetting parents, particularly after the other letter urged RB parents to go ahead and have lots of kids. The risk of transmittal of hereditary RB is 50% per pregnancy. The risk in the general population is still 1:20,000 live births.

For those parents who are just starting their journey with their child, I wish you all luck and happiness - it is a journey with many ups and downs but it can have a happy road for the most part.

mike-

got an email from a guy in japan who has a freind who's son was diagnosed with tri-lateral. we've hooked him up with the people at duke.

the kid isn't doing too well, but hopefully the doctors at duke can help. I just wanted you to know that your website has made a difference. they were basically left with no treatment options and were told that their child was going to die in about 8 months. he may still die, but at least they have more options now than they did yesterday.... and that is important. and your website was the thing that put them in touch with us so we could put them in touch with duke.

this letter wasn't to stroke your ego (lol), but to let you know how important the website is. you've done a good thing.

feel free to post this if you want to.

b