Mike:

I was browsing through the Web and tripped over over home page. I am pleased to find it, as I am interested in offering support for those who have, or deal with RB. I would like to be able to share with you our experiences with RB in our family.

I am Dale Link, and am a adjunct faculty member of Brigham Young University in Provo, Utah. I was born in 1961, in California. When I was about 6 or 7 months old, I was diagnosed with biliteral RB. My mother noticed the "cat's eye" phenomena, the same as in the picture of your son Tony. Sensing something was not right, my mother took me to our eye doctor, and the diagnosis was given. It was learned that my biological mother and grandmother both had the disease. The Link family is my adoptive family, and I never knew or met my bio mother.

I was treated by Dr. Algernon Resse of New York, who at the time was THE expert on RB. Assisted by his colleague, Dr. John Ellsworth, I was treated with Light quadrilation (sp?), and radiation therapy. My left eye was removed, and the right eye received most of the treatment over the years. The disease was eventually cured, and I presently have 20/60 in my remaining eye. I wear a prothesis in my left eye. I spent approximately one year in treatment.

Since that time, I have had other tumors appear in other parts of my body. I have learned from some medical literature that a person who survives RB is 2,000 times likely to develop tumors or cancer. If you would like a copy of the information I have, I will be happy to send you a copy. This is not like I have something growing in me every year, no. I had a bone tumor when I was about 7 years old, which was successfully treated with no complications. When I was 31 years old, I had a leimymo sarcoma in my colon. This too, was successfully removed. When I was 33 years old, I had two sarcomas in my liver. Those too, were successfully removed. I have had some benign lipomas on my shoulders, but those were easily removed by liposuction. Since March of 1996, I have had no active tumors or cancer. I will be 35 years old this December. Yes, I plan to be around for a long time, and enjoy life to its fullest!

In 1988, I married a lovely lady named Sandra from Idaho. In December of 1989, our son, Eric, was born. As we both knew that the risks for RB was high, we insisted on Eric having an eye examination when he was born. When he was born, his eyes were "examined" by a simple penlight exam. The attending pedes doctor assured us our son was fine, and there was nothing to worry about.

However, 8 months later, in August of 1990, Eric had the usual "cat's eye" phenomena. Our family doctor referred us to Dr. Robert Hoffman of Primary Children's Hospital in Salt Lake City. I can't say enough good about Dr. Hoffmna. He has been the greatest blessing and friend in out lives. Since Primary Children's is connected to the Univeristy of Utah Medical School, we had access to the latest and greatest in the medical field.

The diagnosis was not good, though. Eric's RB was bilateral, and quite large. He would undergo EUA, and would have his right eye removed. Because of the time (8 months), the tumor had spread throughout the eye. The tumor had spread close to the optic nerve, and so the nerve was removed along with the eye. As young parents, this broke our hearts. It was probably more difficult for my wife than me. Somehow, I had been mentally preparing myself for this possiblity all my life, but still, reality is a harsh taskmaster.

Eric would receive radiation therapy for six weeks after his surgery. The tumor in his left eye was scucessfully treated. Later, he developed cataracts as a result of the therapy, and required a lens implant. This year found another challenge to face. We learned that fluid from the eye was leaking. Laser surgery was required, and all of the leaks expect one was sealed. The one that could not be sealed was close to the nerve, and the doctors did not want to take the risk. However, they are optimistic. It's now a matter of waiting and see what happens.

Eric sounds a lot like your son Tony. He is a happy, energetic boy. His present vision is rated somewhere at 20/200--20/400. He wears glasses, although he doesn't like to. Until this year, Eric attended our local elementary school. We stopped because things got to the point where he couldn't keep up with his classmates due to his low vision. He recently transferred to the Utah School for the Blind extension near our home. He is receiving instruction in both large print and braille. Eric has a more positive attitude about school now, and is doing well. He will be 7 this December, and is already half the size (3 ft.)of his dad. We don't know if this will be a permanent move, or temporary, but we will worry about that when we reach that bridge. In the meantime, we want to help Eric develop those skill he will need to be successful in school.

We have in the recent years became more active in the research aspect of RB. The Utah Cancer Research Center is preparing to some long term studies with my son and me. For them, this will be a chance to study a father and son pair. We might make that two sons, though. My wife is pregnant with our second son, and is scheduled to be born in December. RB is detectable under ultrasound, according to Dr. Hoffman. The specialist has to know what to look for, though. So far, nothing shows that the baby will have RB. That does not mean we won't go through the usual examinations. We are much wiser now than we were.

I am more than happy to make your acquaintance, and would love to hear from you. I am more than happy to share our experience and knowledge with others. Please feel free to pass on this info to any one who might benefit from and enjoy reading this.

Hope to hear from you,

Dale E Link

linkd@cougar.netutah.net

11/12/96

Mike;

It was a pleasure to hear from you. I have looked at the web site, and it looks very nice. I took the opportunity to read some others' experiences, and was touched by them all. Hope this web page is the beginning of something great.

Perhaps it ought to be part of the standard medical school curriculum to include information about RB. It is unfortunate that all too many doctors put on a false air of professionalism when in fact they're stumped. I understand this due the fact that patients might lose confidence in their doctor, but I do not see anything wrong with saying "I don't know," and then referring the child and its parents to someone who does. Our very own opthalmologist is doing something about educating doctors about RB.

I have mentioned Primary Children's Hospital in my letter. Primary is one of the finest children's hospital I ever seen. The hospital is a non profit organization, and offers treatment to all children regardless of the parents' ability to pay. The hospital is dependent upon generous private donations that it receives each year. An example of the generosity of the hospital recently is the case of Siamese twin girls from Havana. These girls were joined at the head, right on top of the other. The girls had two brains, but shared a common part of the skull. The girls were relatively healthy, but the parents could not afford to have them separated. So, they were flown here to Utah, and separated. After a 14 hour surgical procedure, they were successfully separated, and are doing very well. All at no cost to their parents. Our own opthalmologist, Dr. Robert Hoffman, has been a very generous gentleman. He refuses to accept one penny from us. Over the years, he has diligently attended to Eric's needs, all without complaint. Many University of Utah medical students have come to know Eric through Dr. Hoffman's work. There's always a small crowd of med students when Eric vists Dr. Hoffman. Dr. Hoffman shares the same feelings that I do; that there are not enough doctors who know about and understand RB. He has a mini crusade to teach new pediatricians about RB. Therefore, all the med students. Eric, of course, does not understand why all those doctors are there to see him, but he sure enjoys the attention! If there is anyone who needs help from a good RB expert, feel free to contact me. I will be more than pleased to refer them to Dr. Hoffman and his staff. The hospital will be more than happy to help out any way it can.

Looking forward to hearing from you again soon. And the same here. Hope this is the beginning of a great friendship. Take care, and be hearing from you.

Dale

Sends Email to. Dale