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.

Yesterday, The Boy, The Man and I went to the hospital to have The Meeting. We thought we were going to meet with the oncologist and the neurosurgeon, but it ended up just being the oncologist. Most of our questions and concerns are actually neurosurgery-related, but The Man seemed happier to have been present anyway. I actually felt a little bit annoyed that the onco went through the scan in a lot more detail with The Man (well, I looked, too) than he showed me on my own the other week. I do understand that we were under a lot more pressure that day, and that he was trying to show me quickly so we could get on with the discussion, and that The Man seemed to be requiring more justification, but it just proves how little I stood my ground and just accepted their decision.

The onco still insists that the tumour wasn’t completely blocking the CSF flow before, and that now the cyst is. He thinks the shunt was working on the old setting because there was still flow through the right spot, but that now it was under more strain; also that The Boy was asymptomatic only because the fluid build-up hadn’t become too major yet (keeping in mind that this development has happened sometime over the last six months, and probably not suddenly). He still believes that a shunt reset is simply buying time, and that the cyst fenestration is necessary. Obviously it’s not as emergent as they originally made it sound, because they’re not in a terribly big hurry to get us back in there. Even if the MRI department is having a busy week, they would fit in an emergency.

So anyway, there is now a new MRI request in the works, destined for sometime during the first half of November (to be confirmed when we receive the letter, hopefully with more than an hour’s notice this time!)

Apparently The Man asked too many questions (in The Boy’s opinion). The Quote of the Day (after we had left the building) was something like “Dad, if I ever take you to the hospital with me again, please don’t embarrass me like that!!!” I’m not sure that it can really be avoided, but it was a funny moment.

The Boy himself is doing really well. The last headache was on Saturday morning during the cricket game. It was a mild one, and it was a really hot morning. Standing out in the sun for three hours is enough to give anybody a headache, so I can’t blame anything sinister on this one at this stage.

We’re doing OK. The weekend was good, and so far this week is going a lot more smoothly than last week. Thank you for your continued support, and especially for the messages. We appreciate all of them.

Our new game plan is trying to get as many raw, organic green things into The Boy as we can, increasing his pH (we are all trying to maintain a better level of alkalinity). He’s being more thoughtful about what he chooses to eat, but Green Smoothie iceblocks are our best weapon for that right now. Fortunately for The Brother, he will eat (or at least try) almost any green smoothie, fruit and vegetable we show him, but unfortunately for The Boy, he’s still not as enthusiastic. Any other suggestions for gently enticing a kid to happily consume more raw greens and veg without covering them in cheese or flavourings (we’re also trying to avoid dairy, gluten/wheat/most grains, refined sugars, artificial additives etc) would be most welcome. He’s being picky about green smoothies now, too, so anybody with green smoothie vs fussy child experience that has fun and foolproof recipes, feel free to let me know!!!

Yesterday, The Boy lost his fourth tooth. He had eaten various things during the day, being ever so careful to avoid biting hard things with the extremely loose tooth. Then I cut open a watermelon. He went outside to eat a piece, and not long after, came inside, red stains down his shirt, missing that tooth and informing me that he didn’t know where it had gone. It’s possibly embedded in the piece of watermelon he threw in the compost pile, or he may have swallowed it. He said he was bleeding. I laughed, and joked that you couldn’t tell which red stains were blood and which were watermelon. He was a bit upset, partly because I had laughed (I didn’t immediately realise he was unhappy about the event) and mainly because he didn’t know where the tooth was. He lost the last one too. He informed me that the red stains would be different shades. Two of the other teeth have come through the gum now, but there is still a huge gap right where his four front middle teeth used to be. I have to admit, he looks and sounds pretty cute (don’t tell him I said that!)

Meanwhile, yesterday morning I called Oncology, and eventually received a return call from the oncologist. He doesn’t seem worried about us going in before our meeting on Monday, unless we ourselves are worried about The Boy. He had another headache tonight, but insisted it was not bad. He and The Man have developed a little pain scale system. Holding up ten fingers means 100% (worst) and holding up no fingers means 0% (no pain). He has taken to breaking it down further, holding up a bent finger for half (5%) and a new one today - a quarter (for which he didn’t work out a percentage). To me, if he’s working out fractions and percentages, I’m pretty sure the headache isn’t too bad. In any case, he’s getting plenty of maths practice.

I know I have asked him too many times, because he is trying very hard not to tell me about any pain. He’s worried that he’ll miss his cricket game tomorrow. I’ve explained that his health is more important than a cricket game, and he understands, but he’s very determined.

This morning, he rode with me to take his brother to school. After dropping him off, we went to the church. On Fridays after Mass, they have the Exposition of the Blessed Sacrament and Benediction. We arrived at Mass a little late, then stayed for the rest. We went last Friday too. That time was more out of desperation on my part. This morning was more hopeful. I’m not sure if he fell asleep this morning, but he rested during the quiet time and seemed happy enough to stay with me.

Today was also the funeral of the relative I mentioned last time. I didn’t go; I had to be content with being there in spirit. It was just a bit too far to travel, particularly when I’m being paranoid about the headaches.

Thank you for your support. Special thanks to those who have sent encouragement or messages our way. We appreciate every word. Please remember those who continue on through trials far more difficult that ours. I keep trying to remind myself that no matter how it feels for us, there are people doing it tougher still.

Six days ago, The Boy had his latest MRI scan. I’m finally getting around to posting about it here. I’ve vented in other places, and I’ve expended a lot of emotional energy stressing out about phonecalls and appointments, but it’s time I updated properly here. I’ll try to keep it as short as I can, but no promises…

First some background. He has been doing extremely well. Cricket season has started, and he’s been participating enthusiastically. He has still had some headaches, but generally after exertion, hot days, and/or not enough to eat/drink. During the week or so leading up to the scan, he rarely complained of a headache at all, and he had been walking kilometres with me to and from school, shops etc. Attending this scan, I was the most confident I have ever been that the result would be good. I’m still not entirely convinced that the result wasn’t good, but it sure feels bad. So, enough background.

Things started out well. We got his cannula, prepared for the scan, breezed through the scan. The latest NS Registrar arrived and reset the shunt valve, without asking for an x-ray to check it. She seemed very friendly and, dare I say it, human, and The Boy seemed to feel comfortable with her.

I convinced The Boy to go straight up to Oncology without stopping for more food, since we didn’t want to keep the oncologist waiting too long, and since we expected that consultation to be quick.

Eventually we were called in. The oncologist took more time than usual with the consultation and neuro tests, then dropped the bombshell. He had already summoned the neurosurgeon and registrar, who arrived soon thereafter.

They explained that the cystic portion of the tumour was bigger than last time, and the ventricles were enlarged (not hugely, but definitely larger). They thought the solid portion was about the same, possibly a little smaller, but suggested that it was probably due to compression from the pressure of extra fluid around it.

The neurosurgeon reset the shunt valve to a lower pressure to check if it’s working properly. However, she also wants to drain the cyst with a procedure known as endoscopic fenestration. She started explaining what that would entail. She would drill a (new) hole in the top of his skull, feed a telescopic tube down to the top of the cyst (sitting on top of the solid tumour) and make holes in it to allow the fluid to escape and collapse it. While I was trying to take all of this in, and was distracted by the two main doctors on one side, The Boy was becoming more agitated on my other. He was annoyed that we were taking longer than expected, and he was tired and hungry. He looked at me questioningly, and I said I would explain afterwards. I wanted to tell him myself, while we didn’t have three doctors bombarding us with information. Not long after that, I looked back at him, and he was crying. He reached out his arms to me and burst into tears, wrapping his arms around my neck and burying his face in my shoulder. We stayed that way for the rest of the consultation, maybe ten minutes. I think that the registrar had told him about the surgery, almost immediately after I had said I would explain it later. I was too tired and upset myself to get angry about it right there and then, but made up for it later at home.

While we were in that state, they prepared the consent form. At some point, I signed it. We just wanted to get out of there.

After we came home and told The Man about it, he was angry (partly at me, mostly at the doctors) that I had agreed to surgery without consulting him. Rightly so. I felt angry at the doctors, and at myself, for pressuring me into it without even realising it was one of those decisions we make together. The Boy has been doing so well that we didn’t even consider that both of us should attend that hospital visit. It came completely out of nowhere. From what we can tell, they’re being very enthusiastic about cutting into him, and the risks appear to outweigh the benefits at this time. If the shunt is working, there’s even a risk that the fluid from the cyst could cause a shunt blockage. We don’t want to avoid something that will help him, but we’re not convinced and it really seems more of an experiment right now. At the very least, we would like to know if the shunt is working before we do anything else. One thing at a time sounds logical, doesn’t it?

I contacted the oncologist to try to do some backpedalling. He agreed to arrange to cancel the surgery until we can talk with The Man present. Somehow the message apparently wasn’t communicated between departments, because yesterday the phonecalls started, wondering why we hadn’t turned up. I think that’s sorted now, but we need to chase up a follow-up scan now. The Boy has had a couple of nasty headaches, and I suspect the shunt has gone too far the other way.

So that’s the “brief” version of what has happened since his “routine” scan last week. I wanted to blog/update sooner, but I have been severely lacking in emotional energy, not to mention confused by the rest of the events that have unfolded.

If you’ve read this far, I really appreciate it. If you feel like responding and leaving a message, whether for The Boy or for the rest of us, that would be great. This week has really done a number on me, and while he is coping well, he’s having his moments. I know that the news could have been worse, but it sure could have been better too.

Please also keep in your thoughts all those who are going through so much more than we are right now, including the family of a relative, who passed away on Sunday.

Thank you.

For the record, I’m not complaining about it being boring!

Yesterday was The Boy’s first eye clinic appointment in a year.
There’s more detail in the protected post (login required for that one) but essentially, he did well, cooperated with the doctors, and they don’t want to see him again for another year. All good.

Next week (Thursday) is the MRI. As usual, prayers, support etc. greatly appreciated!

Today, before the huge dust storm had a chance to really arrive, the kids and I went to the shops. The main intention was to visit the bank, but we also returned with sushi for lunch.

After eating his sushi, Boy Two went to the kitchen to have a drink of water. Suddenly, he was sounding a bit panicky and saying something about his tooth. Now, this particular tooth was so loose that we’ve been expecting something to happen every time he eats anything. So Boy One and I went to see what was happening. There was a space where that tooth had been. There wasn’t even any blood (his first lost tooth had been very messy). This tooth had released itself so cleanly that there was nothing to clean up at all… not even a tooth. We looked around where he had been eating. We looked in the cup he had drunk from - although it was a lower-gum tooth, so the chances of it being in the cup were next to impossible.

The only explanation we could come up with was that he had swallowed it while chewing on his sushi. It makes sense; it probably lodged in the sticky rice and slid down easily.

Being the thoughtful, sensitive mother that I am (note self-deprecatory sarcasm), my comment was “I’m not fishing in the toilet tomorrow!” His only concern was that he would still be paid for it. He didn’t appreciate my comment that the tooth fairy still acknowledges lost teeth (in case you missed the memo, he doesn’t believe in the tooth fairy any more).

That reminds me, I should check if he’s asleep; somebody has a delivery to make.

Throughout May, I intended to write something here. I kept putting it off, for various reasons. Now it’s June. So I’m going to do a quick (I hope) summary of May, if I may (and even if I may not!) - in order of date.

We started the month with a visit to the Neurosurgeon, who concurred with the Oncologist. She disagreed with the part of the report that said the ventricles were enlarged, and showed me the image on the screen. I concurred also. I’m happy to agree with the experts when they’re telling me what I want to hear.

Soccer season finally managed to drag its way to a start, a month late due to weather cancellations and public holidays.

The Man turned 40 and I somehow managed to get some people to keep a secret long enough to give him a surprise party.

I was thinking a lot about my Nonno (click on the link if you’re interested in my thoughts). He died 22 years ago that day, just four days shy of his 75th birthday. I especially think of him every year on both the 20th and the 24th, but this year was even more significant than usual. He was ferried to hospital by boat, across floodwaters, and he never came home. This year, around his anniversary, the same area was being inundated again. By his birthday, they were again cleaning up the mess. The weather system also caused flooding in parts of Brisbane, and on the Sunshine and Gold Coasts (as well as massive beach erosion).

More soccer cancellations, and more stress for the decision-makers who can never keep everybody happy. I don’t want their job. Or at least, they should be paid for the stress it causes! They’re volunteers, but nobody seems to realise that when they’re complaining.

Some time later our Club posted a link to this as a “If you think we got it bad, check this out!” sort of thing.

Soccer training was off, but photos were on. This is another time I don’t want the organisers’ job. Glad that only happens once a year! It was even crazier than usual, because most teams didn’t collect their money and forms until the last minute, due to all the training and game cancellations. Games did go ahead this time, so we’ve now managed to play more than half of the scheduled games.

My choir sang in Queen St Mall as part of the Italian Week celebrations (today is Italian Republic Day). We went prepared with the electronic keyboard and were surprised with an acoustic baby grand. That was very cool. The guy on the sound equipment did a great job, and so did the choir. We don’t usually do so well outdoors. To add to the fun, I saw people I haven’t seen in ages, and all of them completely unrelated to each other. I think surprise meetings are the best. Unfortunately, since we all have colds, I went by myself, so the boys didn’t get to participate in the fun.

So there it is, May in a nutshell. Aren’t you glad I didn’t blog every single one of those days in detail?

Let’s see how I go in June…

We had the latest MRI follow-up today. Last week, the oncologist was away, so we couldn’t see him after the scan as we normally do.

So today, the oncologist told us that the scan showed no change - stable - again. The blood test results (hormones etc.) were also good. Basic neuro tests were fine; no sign of precocious puberty (well, we knew that, but he had to check).

Another scan has been requested for sometime at the end of October. Six months. Up until now, the oncologist has been very cautious about stretching out the time between scans. Last time we managed to get to five months, and it felt like we were really pushing our luck to even hint at it. We had been hoping for the day that he agreed to six months, and today he said it so matter-of-factly that it was almost a let-down. But we’ll take what we can get! Six months is great! And, as he said, moving to six-monthly scans after three years of stable scans is quite reasonable. Of course, even better would be shrinkage at the next scan and an even longer time between, but we’re certainly not complaining about today’s result!