A cockatoo called Horse

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.

Today was headache-free. The kids played cricket all morning, and The Boy was the only one who made it through the entire day without having a nap in the afternoon.

Tonight he got ready for bed, said goodnight and took himself to bed. He fell asleep quickly, with no screaming, crying or writhing in pain. Perfect.

Yesterday I was worried, because the day was better than the other days, and the only drama happened after hours, on a Friday night. That’s not the best time to get the doctors who know him involved - we had debated the situation all week, when they would have been more available. Hopefully tomorrow will be good, too.

We’re still not sure why this week has been the way it has, but the last couple of days did improve, so we’re running with that for now.

I wanted to say that today went perfectly (but I can’t). The past week has been far from perfect. The Boy has managed to have at least one headache every day, and the worst at night when he’s trying to go to sleep. He’s even accepted a couple of doses of paracetamol, as I mentioned last time. The other night he had trouble swallowing the tablet and vomited it back up, along with his dinner, and hasn’t tried since. Thankfully, since then, headaches have been less frequent.

Yes, I should be in bed now. We’ve missed out on a lot of sleep this week. I’ve developed the habit of finding excuses to stay up after he’s finally gone to sleep, and consoled myself with the fact that I’ve been up long enough to know he’s done his middle-of-the-night toilet visit, and that he is always feeling better by then.

So today he woke up feeling good. He walked to school with The Man and The Brother (I caught up a bit later), hung around at The Brother’s swimming carnival for a while, caught a bus to the cricket with The Man and played cricket on The Gabba. Along with a whole bunch of other kids and coaches, they did demo activities during the lunch break. Pretty exciting for them. I tried to get a glimpse of them on TV, but they didn’t show very much. Then they caught a bus back, we met up and did some shopping, then came home. All of this, on another hot day, with not a whiff of a headache. He said a shoulder was hurting, but we’re not sure what the story was there. His only other complaint was that he didn’t get a turn at bowling.

Tonight, just as he was getting ready to sleep, the headache started. It didn’t last as long as the other night-time ones have, but still not fun. He’s been asleep for a while now, and I should too, but I just wanted to update quickly. Thank you for the support we’ve received during this past week; very much appreciate, as always.

I suspect that in the morning he’ll be just fine. There’s a cricket game to play.

It’s been a hot week. We’ve had a big weekend.

On Saturday The Boy played cricket all morning, we had visitors and he stressed himself out over a few things. During the afternoon he developed a headache (as did I), then had a restless night (read: periodic screaming/whimpering and sporadic sleep with some sort of distressing dreams going on). He even accepted paracetamol when we all became desperate enough for some sleep. Anybody who knows him or his story knows that this is A Big Deal. Miraculously, it worked instantaneously, which implied that it was not really needed. I’d say that the stress of taking the paracetamol was contributing to that particular pain, and after the job was done, he relaxed. At least something helped, and he finally had a good sleep.

On Sunday morning The Boy played cricket for an hour at a cricket “fun day”, then we hung around for said fun day. The Boy’s Brother started the day upset, but ended up enjoying himself and getting some autographs. The Boy developed another headache while we were there, and we left early (but not much - the “day” finished at midday). During the afternoon, he tried to rest, accepted more paracetamol, and somehow I was the one that fell asleep. I had another mild headache too, and woke up a few hours later (at which time The Man decided he needed to rest). The Boy was still having trouble, and it seemed that lying down didn’t help much. The Man insisted that he should be upright and moving, with mixed success. Another dose of paracetamol didn’t seem to do much, nor did massage or propped up pillows, but eventually The Boy fell asleep on his normal pillow. We’re hoping that he sleeps for the rest of the night and wakes up much better.

The dilemma is this: after a hot weekend, much of it spent in the sun, The Boy suddenly gets headaches. However, there is still doubt over the functioning of his shunt (yes, I know I said it seemed to be working, but it’s still not guaranteed). The Man thinks the shunt is to blame. I argued that he wasn’t feeling like this until this weekend (he’s also had a couple of milder headaches on the hotter days). Add to this that The Boy is very good at getting stressed and tense, and he could probably do with a good back/shoulder massage. At this stage, we’re waiting until morning to decide whether or not to call the hospital.

On the plus side of all of this, we now know (and more importantly, he now knows) that he is capable of swallowing a tablet/capsule. He was quite capable of this when he was three, but after a bad experience during one of his shunt malfunctions, has refused ever since. Not that we want him to be taking tablets/capsules all the time, but he can do it if necessary.

Thank you everybody who has read and/or responded lately. I’m sorry I haven’t answered everybody; I’ve felt a bit overwhelmed with things in general, but I still intend to get back to you. We really appreciate your support.

Today The Boy had the follow-up scan to see what has happened since the last one. We arrived at Oncology Outpatients (OOPs) around 12:25pm to have his cannula placed, where it was so busy that it was finally done just before 2pm. His scan was due at 2pm, but Medical Imaging (MID) were also a bit behind time, so it was OK (I also asked OOPs to phone them when we were still waiting so they would know where we were). The scan itself went smoothly, with The Boy being a perfect statue, even during the longer than usual scan - this time it was head and spine (instead of just head).

The Registrar arrived promptly, and tried really hard to get the temperamental programmer to work, but eventually gave up and requested an x-ray to check it instead. Unfortunately, the MRI had changed the setting significantly (from 70 to 30!!!) and she had to bring another programmer back to reset it. This one worked first time.

After the long wait for the oncologist, he showed us the scans. The ventricles are slightly smaller, which is good, and the cysts (yes, cysts, it’s not just one) have done something interesting too. The top one is slightly smaller, while the back one is slightly larger. It’s difficult to tell if they really are separate cysts, or if one big cyst is just being pushed in different directions, but the total volume appears unchanged since last time. The oncologist insists we’re still just buying time with the valve adjustment, but the shunt seems to be working.

Now we just wait to hear from the neurosurgeon.