OCS: Jordan's Story.

JORDAN
Jordan's story is written by her dad, Jimmie.

Jordan's story is like many I have seen, although at the time we were absolutely clueless about this disease.

At birth, Jordan was a very healthy infant. It was around 7 months of age we started noticing what we thought was a lazy eye. I made an appointment with our family doctor, not a pedetrician. He checked her for a lazy eye and informed us that he thought it would take care of itself and we should just keep checking it from time to time.

Well, over the course of the next couple of months we started to notice the cats eye reflex in pictures. Then one night while playing with her, the light hit her eye just right and we noticed that her eye looked kind of milky. We made an appointment the next day with an Ophthalmologist. I was working that day and will never forget the conversation when I called to check on Jordan. My wife Jean was crying and all she kept saying was "tumor".

I immediately left work. Our local ophthalmologist referred us to the LSU Eye Center in New Orleans La, which is about 2 hours from where we live.

We met with Dr. Gholan Peyman and Dr Greive the next day. They were trying to give us other causes that could be the reason for what were seeing, but we could tell by their mannerisms that they were fairly sure it was a tumor. An appointment was made for the following week to have a Cat scan , then immediately after the scan they told us they needed to do an Exam Under Anesthesia.

We checked into the Children's Hospital in New Orleans the next week. They did the exam early that morning and came out and informed us that it was a large tumor and that they wanted permission to take her eye. Of course we were floored, but we felt that this was the best course of treatment for Jordan.

We were then introduced to her Oncologist, Dr. Lollie Yu. She informed us that they would be taking part of the Optic nerve for testing as well as bone marrow to make sure the cancer had not spread to other parts of her body. Again, we were floored, we had not even thought of it maybe having spread. We waited on pins and needles all the next day for the results.

When they finally did come it was better than we could have ever hoped. There was no sign of it anywhere else, and she would require no further treatment. We were to bring her in for regular check ups and that if everything went like they thought then no other treatment would be required.

Of course, in between all of this we found out about the Sporadic and hereditary forms of Rb, but with no prior family history, and after both the wife and I having eye exams, they were confident it was the sporadic form.

That's Jordan's story of diagnosis and treatment. Everything went by so fast, but I think in retrospect its probably best that it did. We really had no time to sit and ponder the consequences of this disease. After her enucleation I had the opportunity to research Rb a little bit, and it was a good thing it was after the fact. I think we would have been a lot more worried if we had time to really sit down and read all that this disease entails. I went to the library a couple of times, but found that only scared me . So I just trusted the judgement of the team of doctors that we entrusted with her care.

We just put our faith in God and the doctors to lead us in the right direction, and were blessed with an outcome, though not the absolute best we could have had, that was the best for Jordan in the long term.

As for support, we have a very close family and community. Jordan was on so many prayer lists at so many different churches, it was truly amazing how caring our friends and neighbors were during this time. There was one family that contacted us whose daughter had Rb and was a very healthy young woman then. So that helped immensely.

I think what helped us cope the best was how Jordan reacted to everything. She was only 9 months at the time, but she was such a trooper. She had so many people examine her over the course of just her diagnosis. LSU is a teaching hospital and, due to the rarity of Rb, there was a constant stream of Pedeatric interns in to see what Rb looked like. Of course, this was hard at times, but we felt in the long run if one of these interns caught it early because of seeing it in Jordan, it was well worth it.

Its amazing how well children thrive. The day after Jordan's surgery was the first day she walked unassisted. She would just take off down the hall with her patch on her eye, exploring the hallway.

I think the toughest part of it has been the prosthetic eye. Jordan did not like having that process done at all. She would fight it every time we went for a fitting, or just when we tried to remove it for cleaning.

But today, I am happy to report that Jordan is a healthy thriving 10 yr old. With one freaky coincidence: 7 years exactly to the day of Jordan's eye surgery, she had to have surgery to remove her appendix. We thought that was a little spooky, but I told her that was the end of her 7 years of bad luck.

She has adjusted well to her circumstances. She is an exceptional soccer player and she has taken dance and gymnastics and ballet. We continue with our regular eye exams in her "good" eye. They are now yearly and so far everything has been clear. We have a 7 yr old daughter, Jamie, who is Rb free, so we have been truly blessed.

I think having gone through what we have has made us appreciate things a little more. We aren't so much worried about the whole scheme of things anymore, but concentrate on just enjoying the days we have with our family. I for one am a doting daddy, although I love both of my girls very much, I truly admire Jordan's grit and courage. I'm sure as you know, your peers can be quite frank and cruel sometimes, but Jordan handles everything so well.

Jordan is a very caring little girl. She loves animals and wants to be a Veterinarian when she grows up. She is talented athletically and musically. On the other hand, she is stubborn and hard headed like her dad. Very opinionated - things I am not looking forward to in her teenage years :(...lol. But, we will get through them.