This Sucks

Sometimes, I’d think of my blog and feel all wistful, remembering the days of writing daily and having so much to say.  I have thought about coming back but for the most part, with the kids being older it’s so hard to get cute pictures like when they were babies.  We’re always doing something, the house is always a chaotic mess, and you’d think after all these years of parenting and housekeeping I’d have my shit together but I don’t, and that’s embarrassing sometimes. I’d resigned myself to becoming the once in a blue moon blogger, and I was OK with that.  I knew I never wanted to give up the blog, because of the massive amount of memories it holds, but I didn’t feel like it needed to be a daily thing.

And now of course the shit is hitting the fan with Ryan again and I need an outlet.

He went back to finish up his testing and they had him do some things we don’t think were previously scheduled- like a super in depth bone scan and xrays.  I’ve been staying home with Bacon, and Aaron’s been bringing him in, so of course I spend the days on google scaring the crap out of myself.  He only saw nurses and technicians so we don’t have any answers but there was a clear oval mass on his femur and they were concentrating a lot of imaging around that.  According to Dr. Google- osteosarcoma.

I’d come across that name- osteosarcoma- when I was researching what they were looking for with the tests they were running on Ryan earlier in the week.  When you look up what the potential secondary cancers to retinoblastoma are, it comes up as the first one.  Good times.

Of course now I’ve been reading about treatments, prognosis, and all that other depressing stuff, and I can’t sleep.  We don’t even know if that’s what he has, since we haven’t spoken to a doctor yet- but I also knew it was retinoblastoma from Dr. Google before getting those results.

Tomorrow (er today) he goes in to a different doctor, this one is through the school and it’s an appointment we made for him at the end of the school year last year.  It’s an evaluation for a grant/program thing (honestly the details have totally slipped my mind) for visual aids to use at home for homework and stuff.  At school he uses this $3000 piece of equipment and I’d LOVE for him to have one at home- I think it would help tremendously as the years go by and the homework reading piles up- but I doubt they’ll cover that.  We’ll probably be handed a magnifying glass.

I also figure we’ll hear from the other doctor about the scans at some point.

Ryan Update

I’ve reverted back to blogging it seems when it comes to Ryan news… it’s easier to share the longer updates here rather than on Facebook or in individual messages to everyone who asks.

Ryan had appointments today for more testing, and on the way he began crying in the car because his head hurt.  Anyone who knows this kid knows it takes a lot to make him cry in pain, so Aaron called the doctor and turned around to head home because Ryan was asking to just lay down in his own bed.  They told them to come in anyway, so they could check him out.  On the way, Ryan’s head was hurting so much he was sick a few times.  They took him in and gave him an IV with pain and nausea meds, and he perked right back up to his normal self.  They suspect it was a side effect from his lumbar puncture on Friday.

By the time the began the tests he was there for, half the day had gone by.  But he was a champ and was so still during his scan he even fell asleep! So far the preliminary results are looking OK- no sign of bad cells yet.  They’re still talking six months of chemo.  It’s going to be rough, the girls barely remember it last time, and the twins of course weren’t even a year old.  And now with Ryan in school, there’s that to consider- whether he’ll stay out of school during it or attend when he can.

He goes back on Thursday to finish the testing he was unable to complete today, and we’re still of course waiting impatiently for results and answers.

It Never Ends…

I posted about this earlier in the week on Facebook, but here’s a recap for those not there- Ryan’s final pathology results came in from when they removed his eye and there were some retinoblastoma cells in some nerve (not the optic). They are having him go back on Friday morning for more testing (lumbar […]

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I’m Sorry

I know I post a lot about Posh. I honestly try to hold back, because I want to share ALL THE THINGS. I just really truly adore this company and the people. Those who have known me awhile now know that I have done other similar companies in the past- in fact I’m technically still […]

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Best Day Ever.

I did a lot of waffling with this enucleation.  I really wanted to save Ryan’s eye.  But once he said he wanted it out, and then Dr. Shields said get it out, I figured we were making the right choice. And after the call we received from pathology today, I’m even more sure we did […]

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Tough Guy

Ryan came home from his surgery on Monday and was groggy from the anesthesia. They’d dilated his other eye to do a thorough exam while he was under, so it was sensitive to the light.  He was super hungry, and wanted to eat.  He fell asleep a little early, but said he wasn’t in any […]

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