December 1, 1996

Hi, Mike, I'm Kay, Joel's wife. We are not hooked up with ant the Microsoft software. We are both new to RB and the Internet. Let me tell you about our son since I was able to read about yours. Our son Jason, was 8 months old when we first noticed something was wrong with his left eye. (your picture of your son really hit home) He had had a bad cold and the doctor had prescribed a antibiotic and cough med. I was changing his diaper the first night after he started the med's. I looked down at him and noticed something strange with his eye. I called Joel in and tried to show him and explained what I saw. He checked is eyes and didn't really see anything. The next morning I called the doctor and explained what I saw in his eye and told them I thought maybe he could not see out of that eye. I explained the Cat's eye effect I saw in his left eye and they thought that he was having a reaction to the cough med's. I took him off of it but still noticed the effect. I finally got him in to see the doctor but he still did not see it. But suggested we see a eye doctor for Jason. He referred us to a doctor who could not see him till early February, this was early January. He did not express any emergency in seeing this doctor and I told his staff when the appointment was for and they didn't seem to worried about it. So I didn't worry about it as much as I did at first. Besides nobody else seemed to see anything wrong, I just figured I was nuts.

It was a month later when we took him in for a regular appointment , a week before the appointment with the eye doctor. I was at work and my husband took him in. He called me at work and told me that the doctor wanted Jason to be seen by a Doctor at the nearby Children's hospital that day and to come over as soon as I can.

Our Doctor had taken one look at Jason's eye and called the Children's Hospital. I got over there and walked in on the exam to have the doctor start to explain that Jason had a large tumor in the left eye on the retina and the retina was detached and most likely had been for the last 4 months. He had no sight in that eye.

He then told us he wanted to do an exam under anesthesia (sorry I can't spell) and he wanted to do it that next day. It was now 5pm on a Thursday and he was on the phone trying to set things up. It turned out all the people he wanted in the surgery could not make it so he had to wait until the following Tuesday. Jason of course lost his left eye totally and now has a prosthetic eye, that he takes out all the time and once fed to our dog. He had three small tumors in is right eye that the doctors have been treating with cryotherapy. He has had 5 EUA's since this all started in February. On the last one in October he had no recurrence of any tumors. We were thrilled until another little girl, who also had a EUA that day and had been clear for 2 years turned up with another small tumor. I now feel that our nightmare is just beginning and we are sinking fast.

Before when Dr. Hered first asked if we wanted to talk to other parents I kinda felt that we could handle this ourselves and this was all going to go away that everyone was really just trying to pat me on the head and tell me it will be all right and send me on my way, that it wasn't as bad as I thought. Now I want to talk, to find out how everyone else was handling it, to see if somehow we could help each other.

Now you know about us, I am really interested in your wife's illness. I have heard so much about the later years that I need to be prepared for what is next. I am also interested in maybe helping out in setting up a support group for other parents like us. We saw that there is something in Miami, Florida but we have not received any information on it yet.

We live in Jacksonville, FL, We just got this computer and are hooked up to AOL and Bellsouth.net. I will also give you out home phone it you would like to talk person to person.

Write or call soon.

Sincerely,

Kay and Joel Ruben

December 1, 1996

Hi Mike, Sure you can post my letter to your site. I don't have any pictures of Jason with the tumor as you do, it never showed up as well as yours did. Maybe, that is why I had such a hard time trying to get others to see it. When the doctor saw something Dr. Hered said that it had grown so big that the eye was extended some and the fool couldn't miss it.

I had once ran into a lady over in Orange Park, FL in a Toys R us who saw Jason and knew right away that he had a prosthetic eye. Her Daughter had one also. She only had it in one eye and had told us about the Eye Institute in Miami. She had done some research and found that place because she was scared off by my Doctors partner, who gave her only the one choice of radiation. (my doctor remembered her a little and said his partner doesn't have much of a bedside manner when it comes to the parents.) Anyway I found "THE NATIONAL RETINOBLATOMA RESEARCH AND SUPPORT FOUNDATION" on the Internet and e-mailed a Dr. Timothy Murray, MD about information on the support group but haven't heard anything yet. The website said they're trying to organize a network of local support groups. If you don't have it here is the address:

As far as the Lord not giving us more than we can handle, He sure likes to test us. Two years ago, we had our older son in the hospital on December 28th for surgery at the same time my Mother was having surgery in Ft. Lauderdale to repair a torn rotator cuff in her shoulder, and Joel's Father had a major heart attack and died while my son was in surgery. A year ago Jason started to get sick a lot, with high fevers and then we found out about the Eye. While my mother was diagnosed with lung cancer. We are dreading this next holiday season. But I guess so far we've made it through all of it. Mom is not doing well, but she's hanging in there.

I'll be glad to send you a picture, and I hope to have a scanner soon so that I'll be able to do the same. And add my e-mail address I'll be glad to help someone.

Maybe together we can get something going.

Kay

Sends some Email. to KVR407@aol.com