Dear Mike,

A friend of mine was telling me that she had noticed some incorrect information being given out on the net concerning RB., and would I check it out. I stumbled across your Web site, and I must tell you - it is wonderful! The photo of your son is a terrific addition, it is so hard to describe this condition to someone who has never seen it. Thank you for all your hard work! I'm including my long, sad story so feel free to print it on the Net if you like. Actually, it's Ross' story - I'm just his mom.

Ross~

Ross is my second child, born ten years after my oldest son, Blake. Long-awaited by my entire family, I can't begin to tell you how devastated we were when he was diagnosed with bilateral Retinoblastoma at thirteen months of age. We had noticed that one of his eyes 'wandered' a bit, and assumed it was strabismus. Within days, he was seen at Children's Hospital of Wisconsin in Milwaukee, and arrangements were made to begin radiation treatments on his right eye immediately. Over the next few months, the two main tumors were irradiated and cryosurgery was done to his left eye. He had a total of five tumors. By July of 1992, his eyes were considered stable and we began a bi-monthly routine of EUA's, and a yearly CT. In May of 1994, Ross' lymph nodes enlarged on the right side of his neck. We were reassured that Rb. rarely spreads outside the eye, especially for a child that had such early and frequent medical care.

We watched our beautiful, vibrant three year old, slowly deteriorate. June 23rd, we finally convinced our oncologist that a bone marrow biopsy was necessary. I wasn't surprised at the results. The Rb. had spread to his eye orbits, sinus cavity, his lymph system, and his bone marrow. (An EUA showed NO CHANGE. The original tumors were still absolutely stable within the eyes. Without treatment, they gave him two weeks, at best. We opted to start chemotherapy immediately, working with Dr. Pratt's protocol from St. Jude's Hospital. Ross responded so well to treatment - within a week he was up, running around, almost his old self. Our doctors were very up-front in his prognosis - a Fellow that we worked closely with, located a child in Europe who had undergone a bone marrow transplant and was disease-free after five years. We were elated! We located a doctor in Chicago who was willing to do the transplant, and started proceedings. (It was to be a stem-cell transplant.) Shortly after cell collection began in late September, Ross relapsed. I knew it, the doctors knew it, but we remained hopeful that the chemo would again put him into remission. We lived on that faith until December 19, 1994, when he died just nine days before his fourth birthday.

Can I name some names, here? Our doctors were terrific. They never said they had a cure, they let me be involved in my son's daily care, they were open and honest with everything I demanded of them. When the time came to bury our Ross, they were there for him, too. They taught me that medical care was teamwork, and listened intently to other physician's advice. I will forever measure the medical profession by these two special people, Dr. Steven Weitman and Dr. David Margolis from Children's Hospital of Wisconsin.

It's been a long two years adjusting to life without Ross. Mother Nature wasn't quite finished with us, yet. After eighteen years of infertility, I became pregnant in the fall of 1995. We promptly ran to Chicago for genetic testing - we were able to locate some of Ross' stem cells that were still kept in storage after he died. The testing put our odds at about 6%, worth the risk by our calculations. Our daughter, Theodora Violet, was born prematurely on May 9th of last year. She had a very rough start, but seems to be doing well, now. Of course, there are regular eye exams, but so far she is clear. (As is my sixteen year old son, my husband and I, all our parents and siblings... We've done everything but check the neighbors-)

So, there is Ross' story. Or rather, the story of his illness. He was much more than just Retinoblastoma - he lived every day as if it were his last. He touched and affected everyone around him, he was a very charming and outgoing boy. He left a legacy of us who love him, those that admired his courage, all of us who miss him. (I know people that die at age eighty - and you can't say that about them!)

Sincerely,

Ross' Mom.

Peg Rousar-Thompson

Dear Mike,

Thank YOU for your kind words! Yes, include my unreliable e-mail address. I feel that I have amassed this incredible amount of knowledge, and now have no use for it. I have been contacted by a parent of another child recently diagnosed, who lives twenty minutes from my house. She was fully aware that my son had died from RB., but contacted me anyway. I tried to be helpful, but I have trouble with the optimism part. I find it hard to believe that anyone can find comfort in talking with me! One of stories I read at your site was from a parent (I think his daughter was trilateral w/unsuccessful bone marrow transplant.)who was frustrated by support groups that recommended that he keep his mouth shut - I've run into similar instances. A dear friend of mine, whose bilateral son is now in his forties, always pushes me to paint a pretty picture for newly diagnosed parents. By just speaking to me, they know that 'the worst can happen' even to them. I got all my beginning Rb. knowledge from other parents, and it was because of them that I was able to go to my son's doctors and speak on their level. (They used to tease me that I deserved an honorary medical degree - I'd laugh and tell them not to make me 'specialize'.) So, anyway, I'm rambling and have gotten WAY away from the subject - Yes, give out the e-mail, as long as the other parents know my story before they contact me! I would love nothing more than to see Ross' beautiful face on the internet! I don't have access to a scanner (it's on my wish-list) but I will happily send you a photo of him. It's only a wallet size, but it's studio-quality, taken right before he relapsed. (So he has all his hair.) Ross adored the computer, and I know this would have really tickled him! Send me your address, and I'll get his photo in the post, asap. Thanks, again for your kind words. Grieving is hard work, and I've never worked so hard at something in my entire life. One of the first things I had to learn is that 'blame' is counter-productive. I can't be angry at the doctors, (they were truly wonderful-) God and I have reached a tentative understanding, (I don't blame him for 'taking' Ross, but I don't 'thank' him for sending Theodora, either.) and I can't blame myself because I did everything I possibly could to save my son. So, on a nice, clear night, when the wind is blowing in the right direction - this all makes perfect sense to me! Okay, sorry, I'm rambling again! It's late, Teddy has some lovely virus that makes her cranky, (as does my husband) and the kids are off school tomorrow, so I'll have a house full of teenagers - so please forgive my - I'm doing it again, aren't I?! Sorry! I'll say goodnight, now!

Peg...

Feel free to add my second letter to the first, edit out my ramblings if you like. I'm also in touch with a few other grieving parents on the net (and locally) if you run across anyone who would like to hear from me. As far as information on the net and Rb.,

Somewhere, in all my massive reading, I read that radiation to the head causes Attention Deficit Disorder in 100% of the cases. Ever heard anything like that? This may be a new development since my son's treatment in 1992. The more I read about ADD, the more convinced I am that my son did exhibit some signs of it. Of course, it really doesn't matter for us now, nor do I think I would have altered his treatment at the time, had I been aware of it. If this is the case, though, most children would benefit from early intervention, so it might be a subject that other Rb. parents should be aware of. (Gee, wish I could remember where I read that...)

Sends some Email. to Peg