Nov 27, 2021

Out of the woods... for now.

With as much free time as I tend to have, would think I would have updated sooner.  At least I fainlly remembered, even if it's a few months later.

The corneal debridlement surgery went well; no real problems.  Cleaned off what could be safely cleaned; there were a few thin spots but mostly doing okay.  Added a contact lens for protection and an amniotic sac sewn into my eyelids to keep the lens in place and extra moisture.  Also some dissolvable plugs for my tear ducts to keep what little fluid was produced, focused on healing.

Overly enjoyed the meal afterwards since it was about 4pm by the time everything was done.  Trying to eat noodly food with no vision isn't fun when you're not used to it, but was worth it.

Stayed up there overnight for a follow-up at 7:30am the next morning (given it's a 2-2.5 hour drive each way, not driving home and back the next early morning).  But everything looked good.  They were kinda surprised I wasn't in more pain.  Other than when I basically got my nose broken, surgery pain has rarely been a problem.

First few days home were pretty boring.  Lotsa drops (lubricating/moisturizing and antibiotics drops almost hourly).  Vision was basically just a solid blur, but by the fourth or so day, it wasn't too horrible and I could kinda do most stuff I could before.  Some double vision, some random blurriness when the sac would get baggy and double up on itself... but for the most part, tolerable.

Then came the follow-ups.  

Thankfully the first visit was here in town, where my local doc said it looked good.

Following week was back up there again.  The sac was removed, and they took the lens out to get a decent look.  It wasn't healing as well as desired- the thinner patches hadn't healed up and it was a little dry. So, they needed to put a replacement contact back in, and... hoo boy.  That's when they learned just how strong my body tries to close my eye when faced with bright light.  (My local eye doc says it's one of the strongest reflexes he's ever seen.)  Took a pair of docs probably twenty minutes trying to get my eye open enough to get the contact in properly... but eventually made it.

I had hoped it was the amniotic sac (which was described as similar to looking thru wax paper) was what had caused the double vision, but it was apparently the contact.  The few minutes of my eye being able to breathe with neither one was nice; that ordeal putting the new contact in after, not so much.  And dealing with the double vision for a while longer... yay.

Another local visit a week later.  Still doing well, the spots that the specialist recognized were visible but improving.

Trip back up there again the following week.  Again, healing decently but not at the expected/desired pace.  If it wasn't doing better next office visit, would mean going back under the next day for another contact lens replacement and potentially another amniotic sac.

Thankfully, that next visit a week and a half later had improved enough.  Lens was taken out, vision back to normal (so happy to not have double vision any more!), and got back to my regular follow-ups with my doctors down here.

So overall, after 1,000+ miles of trips back and forth over a month and a half, vision seems about the same as before the problems started occurring, but lack of blurriness is great.

Now the final part of the equation, seeing how long this will last.  Might not need to happen again, might be a few years; hard to know when the radiation damage is sending all the mixed signals.  At least we know a bit more for the future and can probably avoid some of the middle visits and just keep it secured longer.  Not fun for trying to see during that time, but I think I'll take it to fix those vision issues.

(Though I am going back up there again.  CJ's new oncologist is connecting me with a geneticist revisit to se if technology has improved enough to isolate my specific Rb1 mutation that wasn't visible before.  At least I know what to expect there.)

Jun 11, 2021

Old and dusty... and the road I'm now wandering down is too

It's been a few years, and there hasn't been much to report on CJ's end.  He's stable, gets EUAs once in a while and yearly MRIs, but he's basically outta the woods.  COVID obviously threw a wrench into everything, but people weren't pressuring us to get in and get them done rgardless of consequences, beacuse things are at a good enough condition as is.  Nothing new expected to grow any more.

He's got the one major tumor in his central vision in one eye, with mild issues in his other eye, but it sounds like he can correct around it and seems to do fine with it.  It hurts that I can't relate more than anyone else can at this point- I have zero frame of reference on having sight with two eyes to know what can and can't correct or how only partial loss can affect it.  I can be (and am) an advocate to make sure he gest the help he needs with school and anything else, and obviously continue to give all the love and support I have, but... it's mostly outta my realm now.

What IS in my realm now, is me on the other end of this path, and that brings me to posting again.

The corneal scar I've had on my left eye was starting to get more inflamed, irritated, and such a few years ago.  I got on some meds for it and it's doing better, which is good; however, it's also moving up into my actual line of vision, which means I randomly go from my usual crap-vision to BLUR with a capital F-U-C-Nuffin.

That was all fine and dandy (well, not really, but, y'know).  And then it started happening more and more often.  Once I finally got in to see my retina specialist this year, I told him that I think my vision was starting to give up the ghost.  He said bring it up with my regular ophthalmologist, which I did, and after my exam, he agreed on the assessment.

I had seen a specialist a few years ago when I first had the cornea issues, and was referred to him again.  My scar actually looks decent, in the grand scheme of things, but the radiation from long ago is starting to take its toll.  Metaphorically, the cornea is a skin-like cover over the eye; unfortunately, what produces my "skin" is starting to go haywire from the radiation damage.  It's not flat and smooth like skin should be, instead clumpy in spots, like having blisters.  Just blisters you have to look through and don't get the satisfaction of being able to pick yourself.

So now, in a few weeks, I get to go under anesthesia to get these blisters scraped off.

The best result is a smooth procedure with no surprises; however, with how scattershot everything is with the radiation damage, healing can also be a problem.  Not enough lubrication from destroyed tear glands or other possible infection could lead to irritation and make things worse.  (To help prevent this, I'm going to have an amniotic cover sewn in place over my eye for a few weeks after the procedure, like a coating of wax paper.)

If this does fix the problem, the radiation damage also means I will probably continue to have this irregular "skin growth".  The fix could help for a few weeks, a few months, a few years, or maybe longer, it's all up in the air.

If there's too little production (or reproduction) in spots, or issues with the healing process that lead to more scarring, corneal transplants may be on the table.  Same issues, just higher stakes with more involved.

And if things are exacerbated further, the final step is going after the "skin" producing parts with treatments on the caliber of a heart/liver/other major organ transplant, done by about five people in the US, including months of immunosuppressants and other intense drugs and such.

So here's to hoping for a smooth ride.  The next few weeks before and after surgery will be a bit harrowing, and not much to do but wait and see how things go.  I guess I've had my fair share of good and bad luck in life at least, so I'm not set on either a perfect outcome with no issues, nor doom and gloom.  We'll see where it goes.

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.