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.