A cockatoo called Horse

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 Obviously it’s not as emergent as they originally made it sound, because they’re not in a terribly big hurry to get us back in there.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!