This is the story of my daughter Leah's encounter with retinoblastoma. I hope it does someone some good. You have my permission to post it. I don't object to being contacted by anyone who wants to talk, but I prefer the initial contact to be by e-mail. If you post my e-mail address I prefer schulze@wt.net .
Thanks for creating and maintaining this site. I wish there had been such a thing when Leah was diagnosed.
Leah's Story
We moved to Kuwait early in 1986. We had two kids, one (Leah) 2-1/2 years old and the other four weeks old at the time. Within a few weeks we noticed a reflex in one of Leah's eyes. I had seen it before but had thought it had to do with the room lighting. We very quickly figured out she had no sight in that eye and took her to the Kuwait Oil Company hospital. The ophthalmologist immediately diagnosed her condition as retinoblastoma and helped us make arrangements to go abroad for treatment.
We decided to get treatment at Great Ormond Street Hospital in London. Even though it was late at night when we arrived at the hospital, our doctor saw Leah within a few minutes. She had a CAT scan the next day, which conformed the diagnosis. She was scheduled for an enucleation. Leah's sister also was examined with no problems.
Leah's surgery was, I believe, January 28, 1986. That afternoon she was out of the recovery room and resting. There was a TV in the adjacent ward, which we could hear. We could tell that something solemn was going on. The space shuttle had exploded. At that time I decided that there had to be some good from such a miserable day.
There were no tumor cells at the cut end of the optic nerve, nor was there any other involvement outside the eye. Every test report that came back over the next few days was good. We went back to London every six months for follow-up exams until we left Kuwait late in 1987.
Leah had a hydroxyapatite implant installed, which allowed for a thinner and lighter prosthesis. At one point a prosthesis with a ball and socket arrangement, connected to the implant, was tried but this was a failure. (The objective was to get some movement. There was never much movement, and the peg that went into the implant ejected after a few months and could not be reinserted. There was also a lot of discharge associated with the peg. We decided to give up on movement.) I would not encourage anyone to do the peg/ball and socket arrangement unless the technology has changed a lot.
We moved to Phoenix in 1987 and to Houston in 1998. We had a very good ocularist in Phoenix but have not had the need for one yet here in Houston. Our kids had EUAs twice a year until they were old enough for a normal exam. They have had annual exams their entire lives. There have been no further problems. Leah is now sixteen and is about as normal as anyone that age can be. She has a driver's license, has ridden horses most of her life, goes to high school, works part time at Penney's, and drives to her job.
Leah's tumor was unilateral. We have had genetic testing done and have concluded that her tumor was spontaneous, not inherited. We have tried to get my brothers to have their kids' eyes examined in case there is some familial connection. We have not found anyone in either family who has heard of a relative having retinoblasotoma.
While it is devastating news to find out your kid has a disease like this, the outcome is usually a lot like Leah's. I am posting this letter in the hope that it will help ease the mind of a parent who has just found out their kid has this disease.