Apr 12, 2017

CJ & me- one end, another beginning

CJ's last trip out was delayed- the original date to go out ended up being a day NYC (and the rest of the Northeast) was hit with a giant snowstorm.  So, a five-week turnaround ended up being a seven-week turnaround.

The doctor was prepared for intravitreal chemo, and it wasn't necessary- no treatment was needed.  We've been lucky to see very little new activity and these trips are pretty much just checkups at this point.  It looks like we'll be going back to Rochester soon, given that even a longer timeframe brought no new developments.

On the other end of the spectrum, I'm now starting to deal with the effects of age on the treatments I had when I was young.  In mid-December, my eyes started getting really blurry really often, and I ended up off of work.  The scarring on my cornea was inflamed and a few different types of treatment were having no effect, so I was due to head to Rochester.  Being early January, though, that visit was cancelled, and the next available appointment was early March.

So, in early March, I finally managed to see a cornea specialist.  The scarring was still quite irritated, and there's some blockagge in the tear duct.  This could be either an infection, or the tear duct could be giving up the ghost due to the nearby radiation from long ago.

After another wait to get coordinated with another specialist, finally had an exam under anesthesia (yay for being so light-sensitive).  Flushed out the tear duct and taking antibiotics since it looks likely it's an infection.  Once working again, this may restore the balance of water/oil/etc. on the eye enough to fix the issue; however, it may take additional steps.  Thankfully, cornea transplants aren't even on the table yet, and there's a handful of options based on how things go.  For now, though, it's a waiting game as the antibiotics run their course.

Jan 17, 2017

Again overdue

(Posts have not intentionally been infrequent; just a lot of other stuff going on, including complications from my Rb issues that are now affecting my vision.  There will be a post on that when I learn more in early March.)

The IAC worked wonders on CJ's right eye.  Two doses were enough to have everything settle to the point CJ didn't need more- in fact, there's been minimal activity in his right eye since the treatments.   There were a few maintenance visits and in December, it looked like IAC treatments were going to start on his left eye, as a tumor wasn't soaking up enough of the laser treatment.

However, they went with IVC in his visit in early January instead, so we'll see the results on the next trip.  We also got an all-clear on the yearly MRI (to the extent other doctors could look; it didn't show the existing eye tumors).

CJ's survived his first year- healthy and happy.  Even as someone almost secondary to the whole thing (staying home and working for all but one of these trips), it's been amazing for me to see and hear what's gone on and the advances that have been made.  This doesn't even cover support we've gotten from friends and family, as well as organizations the Ronald McDonald House and Children's Flight of Hope (and, of course, MSK for doing the actual treatments).  We're eternally grateful for all the support.