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.

Sep 5, 2016

Long overdue

So, it's been quite a while- things haven't been excessively busy, but not slow enough to really ake the time to sit and concentrate and sort it all out.

(I just peeked at my last post... June 1?!  Wow.  Okay, a bit of this might be out of order, but here we go anyway.)

So, since the insurance hadn't made it through, CJ's first NY trip meant laser treatments and intravitreal chemo (IVC, injected into his eye) as a temporary measure until the IAC was approved.  Coming back again in three weeks.

Three weeks later, with slightly more time to plan, it was the three of us that went out.  Fly out Monday morning, get situated (the Ronald McDonald House was an expereince I really need to write about on its own), and have another IVC treatment on Tuesday.

So, Tuesday is another exam and discussion of what's going on.  The IVC treatments are less than ideal, but preferred to keep the tumors from spreading and doing mroe damage until the IAC is approved.   Also, CJ's one of the rare fwe where this treatment helps shrink the tumors, so overally it's pretty good news.

...Except for the lack of response from insurance (still).  So, these are band-aid fixes that will happen again in another three weeks if we haven't heard anything by that point.  We spend Wednesday doing the tourist thing (Central Park) and Thursday in the airport, waiting to find out our flight's been cancelled.  After some rigamarole with the airport and getting lodging/etc., we're back home Friday and looking at another three weeks out.

It's now mid-July, and Marie's out on the next trip.  Still "soon" from the insurance but nothing confirmed yet, so it's another trip out Monday, IVC on Tuesday, and heading back Thursday.  Things are still looking well, the main tumor's still responding to the IVC treatments, and may be laserable soon.

And then it happens- the insurance has finally given the go-ahead.  With some rescheduling, everything is set for that same week, and CJ gets his first round.  It's a different kind of experience; more personal, but also requires several hours of post-treatment monitoring and such.

This also means compromised immunity; though his counts don't suffer too badly, he did catch a cold after the first treatment, which wasn't the most fun experience.  (Then again, it's never fun for an infant, I suppose.)

And now we're almost caught up.  Two weeks ago was his most recent IAC.  He's responded well to the first treatment, and took the second in stride (except for slightly lower counts afterwards).  He'll have a third (and likely final, at least for now) treatment in another week, provided his counts are up. 

After that, it'll be back to trips to Rochester, which are definitely more manageable; even with the donations and other support from friends, family, and charities, it's a process we'll be happy to not have to continue going through.

His vision is tested each time he gest treatments in New York, and it looks like there's minimal damage.  IAC also tends to reduce the number of recurrences of tumors, so we're hopefully out of the most dense parts of the woods.  He'll likely continue regular checkups for a while, and may have to repeat this process if things get bad again, but as much as the trips out to NY and the doctors there are really good, thorough, and knowledgeable, we'll be totally fine not seeing them again.