Second Surgery -- June 29th

Round 2:
Well, we made it through another one. In a lot of ways it was harder than the first and in other ways, easier. First, a surgery at 6:00 a.m. beats one at 2:00 p.m. from a no-eating perspective. We rolled Ryan out of bed and into the car at 5:30 this morning. He did not flip out as we feared when we got there -- maybe he doesn't remember, but he was fine until the nurse came in with the dreaded drops. We're regulars now, so we know the parking deck, the procedure and the nurses (who are fantastic, we might add!). Peanut now accompanies Ryan to surgery. Here he is with Peanut this morning (who also had dilation drops, compliments of Ryan):

Interestingly, he wasn't nearly as "loopy" as he was the first time after the liquid anesthesia. It seemed to take longer for him to start slurring his words and when they took him away, he was saying (somewhat coherently) that he wanted to go to the beach...

The result.
The procedure went well. Dr. Hubbard said the vessels that he'd zapped the first time look much better (less enflamed). The better news was that the untreated ones looked less "angry and engorged" leading us to believe the avastin is doing its thing. He did see more exhudiate (the yellow leakage that causes the vision loss)than last time under the retina but he said that was common (it gets worse before it gets better). He said that he'd like to do another round in 2 months, and would likely need to do a total of 2-3 more. So, hopefully by the end of the year, we'll be almost finished with the surgeries. After those are complete, he'll have several exams under anesthesia so that he can verify the lack of leakage, and treat any as necessary.

The best news.
The best news is Ryan woke up from the anesthesia much better this time. The first time, he woke up in the recovery room without us. This time, he was wheeled back to us before he woke up, so we were there when he did, and didn't flip out nearly as much as the first time. He really only cried when they removed the IV. We put him in the car and were home by 11 a.m. He slept on the couch until about 2:30, then woke up asking to eat, so we are thrilled with his recovery so far. He's watching Diego with a handfull of chocolate chip cookies - sitting at the table as if he did not just have surgery! His eye is much less swollen than it was the first time. Other than being a bit red and still quite dilated, you wouldn't know he had surgery 6 hours ago. We were really anxious about this recovery, so we're really pleased. We hope tonight goes as well. Now, 7 days of dreaded drops (4x a day) and we're home free until the end of August...

Ryan and his "lunch":


Some Medical Information:
Brian asked the doc why he treats the vessels with cryotherapy instead of laser treatments. He said the lasers don't work with all of the leakage currently present in the eye. Later on, once the body (hopefully) absorbs some of that leakage, they can treat some of the remaining vessels with the laser.


Thanks again for all your notes, prayers and well wishes.

How Common is Coat's?

What are the odds?

Since not a single person we've told has ever heard of this disease or knows someone who has it, we've been looking for a statistic. I'm not sure why -- perhaps to torture ourselves a bit more.

I found this site which lists various rare diseases and their prevalence:
http://www.orpha.net/orphacom/cahiers/docs/GB/Prevalence_of_rare_diseases_by_decreasing_prevalence_or_cases.pdf

Coat's is listed as 2 in 100,000.

If the US population is about 305,000,000, at 1:50,000 there are about 75 new cases each year. Not having been a math major, this may not be an exact calculation, but shows you how uncommon this is.

Yellow Eye in Photos

When Ryan was initially diagnosed with retinoblastoma, rather than Coat's, we went through thousands of photos, trying to pinpoint when the disease first presented. Online sites lead me to believe that children are born with the disease, but present at different times and at different stages. Some cases are detected even in newborns -- others, not until age 10 or later. Recently, I went looking into some old photos, and realized I'd missed a bunch of photos I'd taken of Ryan between ages 1 and 2. We'd been somewhat comforted by thinking that this developed within the last year (sometime after his 2nd birthday, since the pediatrician did not see it at his 2-year-old check-up in May of 2008). I was stunned to see how many earlier photos show the disease. I'm posting some here for several reasons. Some were taken in different rooms (but on the same day) with different lighting and as you'll see, it it shows up in some, and not others. We've tried to comfort ourselves (because it's impossibly hard not to blame ourselves for not taking him to see an eye doctor sooner) by the inconsistencies in photos. The yellow eye bothered us, but when we saw it in maybe 10 of 100 photos, we dismissed it is a camera malfunction. Of course, now that we know, it couldn't be more obvious. For example, these two were taken on easter morning, 2008, taken one after another as you can see by the outfit and location of the photo(if you click on the photo, it will show you a close up, but you have to hit your back browser instead of closing the photo, or you'll close the blog):


And, these were taken on the same day: Christmas, 2007:



I think it's also helpful to see photos of Ryan's eyes as a baby (about 9 months in this photo). It was not present in any photos taken before his first birthday.

I also think it's helpful to see the "normal" red eye reflex -- this photo was taken when he was about 16 months old.

And this one at 18 months:

Also, since we are fortunate to have Nashville's best photographer as our sister, her equipment and flash are so advanced that they "mimic" natural light. It would not have shown up in any of her photos. For example: