Update on Ryan’s Appointment

Just a little recap- During his last exam they couldn’t see what all was going on in his bad eye- the one that turns in more- because there was blood in it. I guess that can happen as the eye tries to repair itself from the tumor damage. So the other day he went back for an exam under anesthesia (EUA) so they could get a better look and they still couldn’t see what they needed to see. They’re sending him for an MRI and going to confer with his primary eye doctor in Philly, (his doctor here did his fellowship under Dr Shields!) but basically it’s going to come down to either an extensive surgery to drain the blood and potentially more chemo, or enucleation. And if we keep it, in addition to the surgery for the blood, he’s supposed to have surgery to help the turn in. If we go the enucleation route, then we’ll be dealing with prosthetics forever. We won’t know if he needs chemo again until they can see if he has any active tumors or seeding in that eye. His better eye is clear.

His appointment for the MRI isn’t until the end of April. That’s a long time if there is something other than blood going on in there. And the more we talk about it, the more the realization hits us that the best option is probably enucleation since he really has no vision in that eye anyway, and it’s been so troublesome in other ways.  Since his other eye has been so stable for so long, they think that if we get rid of his bad eye, the chances of recurrence will drop down so much more.

I’m frustrated because now that I’m coming to terms with him losing an eye, I just want to get it over and done with.  I don’t want to wait and think about it for another month and a half.  I’m already worrying about him keeping his glasses on- it’s so much more important if he’s only got one eye- for protection.  And we haven’t even brought it up to him yet, we really need to have that conversation.

Have I ever mentioned my lack of patience?

All at Once

Do you ever notice how crappy things happen all at once?  I know they say bad things happen in threes, but I’m not counting any longer.  I am generally a pretty optimistic person, and for the most part happy, but sometimes I just get overwhelmed.  I do believe it started with our van- about two weeks ago it just stopped.  We knew we were on borrowed time with it, but it still stinks to have to deal with replacing it.  I’d liked not having a car payment! Of course with Aaron’s crazy work hours, we haven’t had a chance to even start the car shopping process, which leads to me driving to the station at all hours of the night to either drop him off or pick him up so I can have the car while he’s gone.

Then last week I had a conference with Dylan’s teacher.  He’s so bright but he’s struggling with getting shit done.  It’s not just at school, some nights it takes him hours to do 10 minutes of homework.  He is so easily distracted and it drives me nuts (and apparently his teacher too!!).  So we’ve been working with him on this, but the more I think about it the more I wonder if we’re not looking at a future ADHD diagnosis for him.   And we also have Ryan’s recent school issues that I posted about the other day.

It’s March, which is super close to April, which is always a touchy month for me.  I used to not realize what put me into a funky mood, but at least now after all these years I know it’s because of Raime and Connor’s birth/death days.  Usually the build up is the worst part, and I tend to snap out of it for Lili’s birthday.  It’s been long enough for me to know to brace myself, but I still have the random sad days.

All of these worries are taking a backseat right now to retinoblastoma.  I swear, I thought we’d be done dealing with this by now. At least, I’d really hoped we would be!  The last time Ryan went in, the doctor had trouble seeing in his bad eye because of blood.  I guess as the eye heals from the tumors, the vessels sometimes leak.  He’d graduated to being awake during the exams, but they decided to have him go back to the EUA to get a better look.  That’s where he went today.

The EUA really provided no answers, other than yep, his eye is filled with blood.  They can’t tell if there are any active tumors or seeding, so he needs to go back and have an MRI.  That will probably happen next week, and from there they will recommend either a surgery to get rid of the blood which is apparently very intensive, and may require more chemo if they do find anything in the eye, or enucleation. 

The thought of enucleation and dealing with a prosthetic eye freaks me out.


Before last week or so, I would have told you that keeping Ryan back a year was absolutely the best thing we’ve done.  He’s been happy, and he’s been doing a great job catching up to his classmates.  He’s learning braille like woah and seems to be loving it.  On all accounts, it seems he’s […]

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Missing You

Lately, I’ve been missing my blog.  I miss writing about the stuff going on day to day around here.  In retrospect, I can see why I fell out of blogging.  I kept feeling like I had nothing to say, and while that was kind of true, I now think it was because I struggled horribly […]

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Another Perspective.

16 years ago, I was newly married to Aaron and pregnant with our first baby.  We were so in love- with each other and with the child we’d created.  Having three kids from my first marriage, I naively assumed that in August, we’d have our newborn.  My biggest worry was whether I was having a […]

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Quick Back-to-School Checklist for High Schoolers

High school is an exciting time. It doesn’t matter if your student is just starting out on his or her freshman year or if senior year is looming; there are plenty of exciting events and milestones to look forward to. Of course, first your student has to make it through the first day of school. […]

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