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.

Mar 6, 2016

CJ part 3: Good and Bad

Good news and bad news from the latest treatment (moved back a week from the thre-week schedule because his pediatric oncologist wasn't available last week).

The good news is that no more tumors have developed yet.  This is expected- they won't crop up at every visit; we'll (almost certainly) see more eventually, but not this time.

The bad news, though, is that the small tumors from the last appointment are growing back.  They're quite small and aren't big enough to "soak up" the laser treatments and be fully corrected.

Silver lining is that these are the same spots that already exist and already have the damage, so there's no new damage or spreading of the existing areas.

If these visit's treatments turn out to be ineffective with the same result as the last treatment, we'll have to head to New York for the direct chemotherapy.  We'll find out in another three weeks.

Jan 28, 2016

CJ's exam results

CJ's first follow-up exam under anesthesia was today.

The treatment for the previous tumors was a success; there's no recurrence in the spots that were treated.

However, additional tumors were found- one new tumor near the optic nerve in his right eye, and a few small tumors in the outer margins of his left eye.  They were all small enough to be treated with laser therapy (not specific which type, but it sounds like it was less intensive).

We're also staying overnight again, due to the anesthesia; he was right at the cusp of choice whether to stay or go home, but the anesthesiologist recommended h estay.

He'll have another exam/follow-up in three weeks.

More general info / what we know so far:

  • We're not out of the woods.  While we likely won't see more tumors appear at every exam (three weeks apart at the moment), there's a far greater chance of more appearing yet, for several years to come.  The biggest threat is the first few years, but since it's known to be bilateral, will continue to be possible until approximately age 10.
  • The possibility of a trip to New York is similarly not out of the realm of possibility.  This route is all based on how the tumors grow and/or if the treatments become ineffective.
  • We have a few years to wait to start figuring out vision loss (age 3 or 4).  Tumors near the optic nerve are more likely to cause vision loss, but they can appear anywhere on the retina.  The first tumor will definitely cause problems with vision, but complete loss of vision or the eye is unlikely.
  • Exams will continue to be every three weeks until at least age 2, and slow slightly to every 4 to 6 weeks until age 7.  Later exams won't need to be under anesthesia.  MRIs will also be regular, though not with every visit (sounds like six months or so at the moment).