Feb 13, 2018

All good news.

It took us some work to get all the good news (we had car issues to miss the original flight last week, and I stayed home with one kiddo after catching cold/flu/whatever plague on Sunday), but we finally heard it today.


It's not the grand finale, as they still want to check on CJ there semi-annually, but we get to alternate trips to Rochester and NYC now, every three months.  Still not 100% comfortable coming back here totally since CJ is such an odd case.

The tumor that the doctor was watching has also disappeared/gone away.  Can't complain about that, either.

So while not the last trip, twice a year is much nicer than every few weeks to a month.  It's nice to know we're pretty much all out of the woods and just have to watch how things develop later on as a result of what's happened now.


It's been tough dealing with this trip. This is the time of year that I lost my mom to cancer, and CJ's events remind me of what she and I went through.  I've caught a whiff of the gas they use to put CJ to sleep and it stirs up old memories.  His cries are my cries and I remember how much it hurt Mom to have to hold me like the times I have with CJ.  I'm not as strong as she or Marie... but I'm incredibly glad for the advances in technology to give CJ a much better chance.  It's already interesting getting into fatherhood in general, and even moreso seeing how this develops.

Getting old, overdue for bedtime.

Nov 29, 2017

End of an era.

Another New York visit, our second-to-last provided all goes as planned.

 All tumors are dead, and there has been no activity for almost a year.  We have been stretching out visits and our next, scheduled for February, will signify a year with no treatment to either eye.  At that point, there is less than 1% of any recurrence, and though there will still be semi-regular exams under anesthesia, they won't be out here in New York.

It's bittersweet- the Ronald McDonald House has been under construction for most of a year and this was the first visit in that time that anyone has been back here.  It's a wonderful experience at the House and New York overall, but the rushed schedule, jet leg, extra expenses, and time not as a family just make it a bit too much compared to staying closer to home.

Quite lucky nothing worse has come of this and while we haven't really seen the effects yet, they will definitely not be o the extent of what's happened with me, for which I am very thankful.

Jul 19, 2017

Good and bad

Another trip, no treatment.  Based on his age, the chance of CJ developing a new tumor is quite low (around 3%), and even lower in the eye that already got IAC.  The tumor that's been watched is presumed dead, but will still have some follow-up since Dr. A knows the conditionv of everything in CJ's eyes to verify it's still not active.

So, we're pretty much out of the woods there... probided we actually keep on the good side of the odds, which is not usually what happens with us.

My eyes, on the other hand... are just starting to show signs of age.  At my last local follow-up, it sounds like there's not much that can be done.  My eye looks a lot healthier since the antibiotics, but the scarring is going to continue to get in the way.  MY eye doc read the specialist's note, which was basically "not much that can be done but make [me] comfortable".

I've had another instance of eyelids drying out, causing huge problems (my vision was down to 20/600 for a few days), but that appears to have mostly passed.  So again, it's just dealing with day-to-day (or more frequent) changes as my cornea decides whether it wants to blur my vision or not.

It sounds like there may be some more extreme options, but that part wasn't clear in the message from my specialist to my regular eye doc (who read the specialist-to-doctor message).  May try to discuss these again next time I see my eye doc, but we'll see.

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.