Last MRI for 2010 (hopefully)

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Today The Man took The Boy to the hospital for his scan. He was supposed to have it a couple of weeks ago, but we don’t remember seeing a letter, and on that afternoon I found a phone message “reminder” from the week before. Fortunately, they were very understanding and we rescheduled for today.

Apparently, things went smoothly, but we don’t have any results yet, because the oncologist is on holidays. I’m not actually sure when we’re expecting to hear anything, so I can’t say when I’ll update here either.

I was hoping for a positive “verdict” right away, but we’ll find out soon enough.

Permalink Wednesday, 8 December, 2010 11:56 pm, by Mamma Email , 163 words, Categories: Tests & scans, Public posts , 1 comment »Send a trackback »

Worry for nothing and the stress for free

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Today was the big neurosurgeon follow-up. I had done a lot of overthinking after the oncologist’s opinion of the scan results, discussed it with The Man, worked out potential surgery dates that could work out best between sport seasons, The Man’s work commitments and school holidays. I was merely hoping that the excellent eye appointment would, at the very least, buy us some time and wiggle room.

I worried about the appointment, how we would fit things into our day - I had other commitments that were going to be difficult if the appointment was late - and to top it off, it rained overnight, setting in nicely for the day.

We arrived early to get in the queue, found we were already down the list and expected trouble from the start. We then learned that the neurosurgeon was running early, and had already worked through some of her list. While we waited, we prepared The Boy for the possibility that we might have to organise surgery, just as she had wanted last time we saw her. He started to get a little upset, but remained fairly composed. Soon it was our turn, and I braced for the worst. She asked The Boy if he was going to talk to her today (our long-running saga, and sort of their little joke now) and he smiled and agreed. She asked how he was feeling, headaches etc. He said he was good, and happily answered her questions. She looked at the scan, stated that it looked pretty much the same, that yes, the cyst was a little bigger (the report actually says “minor increase”, which is far different from the impression the oncologist gave us) but that the ventricles were not significantly enlarged (and virtually unchanged over the last eight months), and that we could just wait and see what it looks like next time. We told her about the eye appointment (which I had originally intended to use as a bargaining chip) and she seemed happy. She also appeared to think the oncologist was being over-cautious, and then said she’d see us in three months. And that was that. No negotiation, no suggestion of surgery, just “see you next time”. We almost floated out of there!

After all of my worrying, the rest of the day also went smoothly.

It was as if somebody was trying to tell me that I worry too much, or something. ;)

Thank you to all who have been thinking of us and/or praying for us, especially during the last few weeks. It’s amazing to see that sometimes things can be somewhat out of our control in a good way. And we’re much relieved that, unless The Boy develops symptoms worth being concerned about, we don’t have to deal with his doctors and hospital until November.

Permalink Friday, 20 August, 2010 11:55 pm, by Mamma Email , 525 words, Categories: Tests & scans, Surgery, Checkups, Prayer & positivity, Thankfulness, Weather, Public posts, Eyes , 2 comments »Send a trackback »

Eye can't find anything wrong

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You’ll have to forgive my pathetic puns (although I was quite proud of my “champing at the drill bit” last time), but it’s been one of those weeks. Don’t worry, I won’t tell you about the other bits.

Today was the first follow-up after the MRI explanation - eye clinic. This is what I call the “easy” appointment. We’ve been on a twelve month call-back for this one for a couple of years now, and The Boy has always passed his eye tests with flying colours - even the few earlier episodes when he hasn’t liked the doctors and didn’t always cooperate.

Since The Boy still has his cough, and we didn’t get out of the house as early as I wanted, I decided not to catch buses to his eye clinic appointment at the hospital. We dropped The Brother off at school, then sat in the peak hour crawl for an hour. We managed to be only five minutes late for the appointment, and in the end that doesn’t matter, because you have to take a number anyway. We were actually called in quite quickly, and only had to see one eye specialist this time - apparently they’ve changed the system since last time, and the guy we saw took care of the whole appointment (I’m assuming he’s an ophthalmologist, and not the one we’ve seen in the past).

He was very thorough, asked lots of questions about The Boy’s history and why we were there. I explained what I understood of the oncologist’s latest concerns, particularly the monitoring of pressure on the optic nerve (which is always a concern, but really was the main focus today). It obviously helps that The Boy wasn’t worried or nervous in the first place, and the doctor was good at doing all the tests efficiently, but in a putting-you-at-ease kind of way. He took the time to do as many tests as he could think of, including one specifically for the kind of peripheral vision loss/deficit expected in patients with symptomatic optic chiasm tumours.

Finally, the doctor declared that he could find nothing wrong with The Boy’s vision. I can attest that he tried extremely hard to find something (but I’m sure he was happy that he didn’t). He certainly made sure he covered as many possibilities as he could think of. He recommended another twelve month appointment.

Next week we see the neurosurgeon. Since today’s appointment went so well, and there appear to be no urgent optic nerve concerns, I’m hoping that buys us a teeny bit more time. I accept that she will probably want to fenestrate the cyst, just as she wanted last time, but it would be nice if The Boy could see out the remainder of the soccer season before he has to have surgery. I don’t know how much time she would expect him to take to recover, and how long would be prudent to avoid sport, but it’s so close to the end of the season, and the results today seem like a good sign that if surgery is recommended, it could wait a couple more weeks. That would fit nicely in between soccer ending and cricket starting, and give us all time to recover before this baby changes our lives again. Maybe I’m hoping for too many things to fall nicely into place, but I still believe hope is good.

Permalink Tuesday, 10 August, 2010 1:32 pm, by Mamma Email , 604 words, Categories: Tests & scans, Public posts, Eyes , 4 comments »Send a trackback »

The verdict

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The kids have been sick this week. After holding off the threatening cold until the long-awaited school athletics carnival, The Brother finally succumbed on the weekend, and has been home the whole week so far. The Boy caught up a couple of days ago.

Yesterday, I tried, unsuccessfully, to get last week’s scan results in some other way than actually attending today’s appointment face to face. Finally we decided that I should stay home with the kids, while The Man went to the hospital alone. The oncologist was apparently OK with that.

The actual verdict could have been copied, almost verbatim, from last October. Fortunately, The Man only had to face the oncologist, not three doctors at once, and it didn’t end with The Boy and me huddled together in a bawling mess. However, it appears that the cystic part is bigger again, the solid part is stable (which is good), the ventricles are bigger and we need to see more doctors to discuss options. They’re worried that the cyst growth might be putting pressure on the optic nerves, so they’ve brought the eye appointment forward. The oncologist said that if we wait too long and the optic nerves are actually damaged, it can be irreversible, even after the pressure is relieved. We see the neurosurgeon a bit later in the month to discuss her part of the deal. Last time, she was champing at the (drill) bit to get inside his head and fenestrate the cyst, so I expect the same this time. Again, they’ve mentioned chemo, but in a “it won’t help with the cyst, only the solid mass” kind of way, which of course means a sigh of relief for us.

It’s disappointing, of course, especially since he’s been doing so well, both physically and mentally, and it would be great to see that reflected in those pictures, but while it’s not the best result, it’s still a lot better than it could be.

Thank you for your continued support and prayers. I know so many of you have more than enough to deal with right now, and I continue to keep you in my thoughts and prayers too.

Permalink Thursday, 5 August, 2010 10:57 pm, by Mamma Email , 403 words, Categories: Tests & scans, Sibling stuff, Family health, Public posts, Eyes , 3 comments »Send a trackback »

Mostly headache-free

Sorry for the delay in updates. The Boy has been doing a lot better than the last update. We’re still not sure why there were so many headaches during that time, but he’s had a lot more headache-free days lately - or rather, I should probably say that the headaches have decreased, with lots of consecutive good days.

It’s pretty sad that even good days revolve around the theme of headaches, but that’s life with a brain tumour I guess.

I have a vague memory of what life used to be like when a headache was just a headache.

And I’m definitely thankful that we’ve had it as good as we have. I’m thinking of all those who deal with so much more on a daily basis.

Permalink Wednesday, 23 December, 2009 9:30 pm, by Mamma Email , 126 words, Categories: *Brief updates, Public posts , • Send a trackback »

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