Dear Mike,

My name is Kathy I'm 43, I had bilateral RB diagnosed at 2 y/o. there was no family history. I was treated in NY at Columbia Presbyterian Hosp. by Dr. A Reese. I was treated with enucleation of the right eye and radiation of left. I was healthy and 20/20 vision in left eye. I knew that RB was hereditary but didn't realize the other dangers of cancer or severity of the disease. My daughter Anna (unplanned pregnancy) was checked at birth until 5 yrs of age and was fine. I then had a son, Gabriel (planned). He was diagnosed at birth with bilateral RB. I took him to NY to be treated by Dr. Ellsworth he had radiation tx. both eyes responded well to the tx. He was seen by Dr. Morton Smith in St. Louis for follow up. EUA's and CT scans were done. At 20 months a tumor appeared and grew very quickly in his left eye, it had to be removed. his right eye had 13 small seed tumors appear during the next 2 years treated with cryotherapy. By the age of 4 1/2 he seemed to do better, He had no more tumors.

When He started school he was wearing a size 3 pants and he was not growing at a normal speed, He was so cute in his glasses and his intellegent way of speaking and so little everybody fell in love with him. I took him to the endocrine clinic at Children's Hospital St. Louis. He was tested and found to have a growth hormone deficiency. At age 9 he couldn't reach the kitchen faucet for a drink. He was started on synthetic growth hormone and at 16 y/o was 5'8" . The Dr.s felt the radiation tx although very well done hit the pituitary gland and caused it to shrink. I'm so grateful for all the medical advances. Gabriel is 19 1/2 and going to college at Rankin Technical School for refrigeration, heating and air conditioning. He is a BIG strong healthy kid and we see eye to eye.

I have been fairly healthy except a recent skin cancers (sqamous cell) in the area of radiation and also a small tongue cancer (squamous cell) on the side of my tongue. Radiation was not as sofisticated as it has been in the past 20 years and the beam was a lot larger affecting a greater amount of tissue surrounding the eyes. But I am fine now and getting closly monitored by Drs.

We plan on getting genetic testing done for my daughter, Anna now 22. She is very inerested in having children in the future. Gabriel is not at the time in his life to be considering a family but knows of the risk. Both of my kids are very intelegent, I hear that is also a characteristic of the RB gene.

Thanks for having a page on the internet I never realized how much I could find or how many people I could communicate with. You can put my story on the internet and anyone can E-mail me at wharton@mail.usmo.com Kathy