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.

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.