A cockatoo called Horse

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.