Tough start (Day -10 and Day -9)

Well I wish I could say it’s been a smooth start to things, but unfortunately I can’t.

Max had a bad night on Thursday. He was awake every hour until 3am – when he decided that was enough of sleeping (which meant neither of us slept from then on). So we were both already worn out to start off Friday’s events.

Chemo started on Friday morning. The first lot are somewhat milder drugs given in tablet form – but given Max’s age they are dissolved and mixed with flavoured syrup. The first dose wasn’t taken too well by Max so it was decide that a Nasal Gastric Tube should be inserted. This is a long tube that goes in the nose, down the back of his throat and down to the stomach. In a way it’s great to have been done, as all of Max’s oral med’s can now be given through this tube “Mr Nose” – so original with my naming of these things aren’t I?

The process of inserting this line was a horrible experience however. They gave Max some Midazolam (happy drug) but he still screamed throughout and had to be held down by four of us. Such a heart wrenching thing to have to do to your child – I just hope he won’t remember any of these nasty things that are happening to him.

Not long after the tube was inserted, Max proceeded to vomit 4 times – each time completely soaking his bed or me. Still not sure if it was a super early reaction to the chemo, or whether it was due to him eating too soon after having the Midazolam for the tube insertion. Either way, it was great preparation for the next several weeks. One of the nurses gave me a good suggestion to keep in mind: whenever Max vomits we should hold firmly onto his nasal tube otherwise it is likely to be vomited out. And if that happens we would have to go through the whole process of inserting it again – NO THANK YOU VERY MUCH!!! As a result, with even the slightest hint of a gag, I am super woman bounding over drip machines and power cords to hold onto that “Mr Nose”!

Needless to say Friday was an exhausting day, and I have to admit I really struggled. But that wasn’t the end of it. To top of this marvellous day, Tim called me after work claiming that his throat was really sore – and to cut a long story short, he has been prescribed antibiotics and advised not to be around us till at least Tuesday. Great! I’m already exhausted just 2 days in….what timing! Consequently, we arranged for my Mum to come in to support me today (Saturday) – so I was able to have a bit of a break (ie. have a shower and go to the toilet!). Thank you Mum (and Dad for driving her in). I Love you both enormously!! I should mention, there is a bathroom in our room, however this is ONLY for Max’s use. Luckily there are communal showers not too far away, so parents can refresh themselves and smell pretty!

Anyhow Tim has been able to arrange internet access for me so I am now able to continue with updates from our room T2. As I’m typing away, Max is now peacefully sleeping with his new police car, and amongst the continual beeps and boings from the machines…..and I plan to do the same! Goodnight all!