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.

Jun 1, 2016

A new adventure

(Sorry for info overload and likely confusion; there's been a flurry of activity the past week or so.)

So... things weren't doing as well as we thought.

A few new tumors popped up (again near the outer part of the eye, so not doing much for long-term damage) and they responded well to treatment.

However, the oldest tumor, which has always been an issue to some extent, is not responding well to treatments.  Before this round of treatment was even started, the process was underway to head to New York, hopefully for intra-arterial chemotherapy.

So, it made for a chaotic week.  Monday was the exam and Tuesday was the first contact with Memorial Sloan Ketterling Cancer Center.  We were told to head there as soon as possible, but had to wait for insurance to approve first... which happened the following day.  Then it was a fight with insurance to cover the trip- in fact, they drug their feet long enough for us to eat the cost instead (and obviously won't reimburse, either).  Throw in submitting papers after closing and a holiday weekend, and we had no idea what was going on until Tuesday morning.

Enough BS with the insraunce coverage meant Marie and her brother bought tickets outright, and were on their way to New York with CJ.  First plane trip with all of them; some turbulence, some icky weather along the way, but overall not bad (and CJ was complimented on how well he handled the flight... no surprise from our happy little socialite.)

Now that CJ's in New York, he's had his first EUA with those doctors and had more laser treatment, with some dye injection to help the tumors eat up the laser more readily.  We've also learned that the tumors are classified Group A (left) and Group B (right), which means that enucleation is off the radar at this point..

Since nothing has gone smoothly so far, the trend continues with the realization the hospital did not file for pre-authorization with the insurance.  As of writing, the hospital is proceeding with the treatment anyway (since it's their fault)... but not certain when since this was decided after regular office hours today.


And so, more will come as the saga continues.

Apr 27, 2016

Still doing (relatively) well.

Late post since it's been a pretty busy week overall.

Had yet more tumors pop up, though once again, they're small and away from the optic nerve, so not much in the way of new damage.

One of the older, bigger tumors was growing again, inside the old scarring/trteatment area.  It got another round of treatment, but since the scarring's already happened, there's no new damage.

We've progressed to a once-a-month instead of every-three-weeks schedule; aggression is slowing down a little but will continue at this pace for a few years yet.  Similarly, new (or od) tumors that do not react to treatments may still mean a trip to New York.


New employer means new insurance, which will be interesting.  At least we can't be denied for pre-existing conditions any more... and the coverage offerings are quite nice.

Mar 28, 2016

So far, so good.

So, generally good news at today's exam.


The biggest worry was having to fly out to New York for intravascular chemo if the existing tumors did not respond to the second treatment last visit.

Thanksfully, they're responding and shrinking.  The scarring is still damage that can cause problems, but much less than if the tumors expanded and/or didn't respond to treatment.

One new small tumor appeared very recently (was caught very early) and treated; it was small enough that the doctor didn't seem concerned.