Today was one of those days again. High highs and low lows. How many times do I have to repeat it? I do not do rollercoasters. Emotional or otherwise.
Woutertjie received no radiation on Monday because the doctors were worried that he might still be dehydrated from the weekend. Yesterday he received his 22nd dose. It didn’t go as well as the first 20 times though. On Friday he started gagging as soon as the anaesthetic was injected but Elizna thought that it may have been too much saliva or something innocent like that. Yesterday, thank God, they came prepared for something similar.
As soon as the anaesthetic hit him Woutertjie started gagging and turned blue. Elizna said afterwards that she suspects he has oesophagitis, a bit of reflux and lots of radiation-related irritation of his oesophagus and stomach, causing his larynx to go into spasm to protect his lungs from the stomach contents that pushes up. Or something like that. I’m just the mommy. I can’t be expected to remember all the detail. Sue me.
Either way, I haven’t seen Elizna and Nici work so quickly before. I’ve never seen anyone literally turn blue before and I hope I never have to see it ever again. It is very disturbing. They sorted him out quickly and the rest of the session went smoothly.
Afterwards Cristina (oncologist), Gerrit (paediatrician), Elizna (anaethetist) and Dr Jacobs (radiation oncologist) spent lots of time to-ing and fro-ing, trying to decide where to now. For now he will not receive any more radiation this week and I am waiting to hear from Cristina whether he will receive any more at all. The radiation is doing him no favours. He is one very sick little boy at the moment. And face it, there aren’t any tumours. This makes it very difficult. If there are tumours you can look at them to see if they are responding. If there aren’t you are flying blind.
Woutertjie is struggling at the moment. He hasn’t been eating at all since before the weekend. A good day has him eating a spoonful of yoghurt and 4 jelly tots a day. He weighed 19.1kg when he was diagnosed the 24th of December. When radiation started 6 weeks ago he weighed about 17.5kg. He was 16kg on Sunday and 15.4kg today. That is major weight loss. He has been on TPN (total parenteral nutrition) since Monday evening. That means that he gets a milky mixture of all the nutrition he needs into his drip. He managed to drink about 30ml of Energade this afternoon and hasn’t vomited since yesterday, so I have firm belief that he will start getting better soon now that the radiation has stopped.
Why did no one tell me that radiation is this bad? My little fighter who didn’t lie down in the middle of chemo is wasting away. He looks like a broken bird. He was born at 4.2kg and has always been tall and big and strong. Within 2 weeks he has gone from chemo-skinny to skeletal. I can’t take it. It is going to break me.
The high? We are probably done with radiation.
The low? Here are the pictures. See for yourself.