7 to 10 Dec 06

Thursday, 7 December

Today was fairly uneventful. Once again we spent most of the day trying to keep Olivia entertained, which can be quite a challenge at times. It’s particularly frustrating for her as she’s not allowed out of bed while the chemo is running. She’s lucky, in that, she does get a few hours break from the chemo to allow hydration fluids to run in between doses. This allows us to take her for short walks. She loves it! We take her to the play room or down to the parents’ lounge and to the outdoor verandah. She jumps at any opportunity to go for a walk.

James is staying with Olivia tonight.

Friday, 8 December

Today, the countdown was on for the ward’s Christmas party. Olivia was so excited. It started at about 1.30 but she wanted to go ‘now!’. ‘Now!’ is the word of the moment. EVERYTHING has to happen NOW. The party was to be held in the lounge which meant that all of the children would have to walk there. The head nurse made an exception for the children who were having chemo and she said that it was one day of the year she would allow it as it meant so much to the kids. And it really did. When we got to the party, we sat on the verandah. The music therapist and others were singing Christmas carols and the kids joined in whilst also playing different musical instruments. Their faces beamed. Soon afterwards, Santa arrived with presents for all the kids. Olivia checked him out for a while before she looked at me and nervously said, ‘Mummy, cuddle’. She looked petrified. Anyway, Santa gave her some weird little clay creatures that you can paint with water colours. The older girl sitting next to Olivia burst into tears when she saw her present, saying ‘Santa always gives me horrible presents – every year’. Olivia took one look at this girl’s present, which happened to be a beading kit and said ‘I want that one’. The girl gave it to her. Olivia offered a swap but apparently the girl didn’t like Olivia’s present either! We then went inside and had some party food which Olivia wasn’t so keen on. James, on the other hand, had a feast. He’s also taken quite a liking to the hospital food. This worried me at first (I think it would worry anyone who’s ever tasted hospital food) but I have now realized that I no longer need to be so concerned about the quality of the food that I cook! James will eat anything. [Hi James here – that is not true, I will not eat the pasta mixed with flour and water and passed off as Carbonara!]

I am staying with Olivia tonight.

Saturday, 9 December

Last night was awful. I think I attempted to get to bed at about 10 but there was so much noise and the nurse hadn’t come to change Olivia’s nappy so I eventually had to do that. Olivia’s nappies require changing every two hours – firstly, because the nurses need to weigh them to determine if she is getting enough fluid through her drip to flush the chemo drugs and secondly, because if they’re not changed after two hours, her nappies leak and she wets the bed. I requested several times that her nappies be changed every two hours to avoid bedwetting and me having to get up to do it. Some nurses are reliable but most get too busy or simply forget. Luckily, I woke up just before 12.30 because I noticed that she had a very full nappy so I had to change her. Not long after, I pointed out to the nurse (again) that I would like her nappies changed every two hours. The nurse did come in about 2 hours later to change her nappy (I always wake up anyway – I’m a very light sleeper, especially in the hospital). However, about 20 minutes later, Olivia began vomiting. The poor thing, she was so sick. I always find that part of the treatment really difficult. I always think to myself, I just wish it was me having to go through this and not her. The nurse then came to help me clean up Olivia and change her sheets. Naturally, Olivia was upset but she soon calmed down and seemed to handle the situation well. She’s so strong. Once she settled back into bed, it wasn’t long before she began vomiting again. Luckily, I had a bowl handy and she missed her pj’s and sheets. The nurse came in and we agreed that she should have a dose of Dexamethasone on top of the Ondansatron for the nausea and vomiting. James and I call it ‘the dex’, the dreaded dex. In case I hadn’t mentioned it before in the journal, this is the drug (it’s a steroid) that makes her very agitated and moody. We had big problems with it last time. However. I felt that one dose would be unlikely to make a difference to her behaviour. The nurse indicated that she was surprised Olivia hadn’t been sick already. She said most kids get very sick with the Cisplatin, particularly early on.

It took quite a while for Oli and I to go back to sleep. I spent most of the time comforting her and holding her hand. The other little boy, sharing the bay with us, also woke several times crying with tummy pains. His mother complained the next day that he then stayed awake from 4 am playing his computer games. Olivia and I woke up quite early and I was in a zombie-like state for most of the day. James, on the other hand, boasted about the seven and a half hours sleep he had at RMH. For some reason, I always seem to score the rough nights in hospital.

Olivia seemed to be fine throughout the day. I headed off to see Robbie Williams that evening at Aussie Stadium. Apart from the masses of people also trying to find parking, it was an awesome night. My friend, Tash, gave me a ticket and we went along with her sisters. We had a couple of drinks and really enjoyed the show. It was exactly what I needed. Thanks, Tash! Mind you, I did get trapped on the roof top carpark for over an hour, waiting for the five levels of cars beneath me to get out. I thought I’d never make it out. Luckily, I made it home before brekky!

Sunday, 10 December

Olivia finished her chemo yesterday afternoon but needed to remain in hospital until today to allow her post hydration fluids to run through. When I arrived at the hospital, she was unhooked from her machine. She had to have a chest x-ray and an insurflon put in her leg, so that she could have her twice daily injection of G-CSF. As usual, Olivia wanted to be carried back to RMH, though we were already overloaded with bags full of Oli’s toys and games. We managed to get away just after lunch, anxious to get see our little Sarah. However, as luck would have it, we immediately got stuck in Sydney’s notorious traffic. We eventually made it home late afternoon and were so happy to see Sarah’s smiling face and those big round eyes. All we ever hear are great reports from her Grandma. Apparently, she is always happy and well behaved, and she rarely wakes up during the night, only occasionally for a cuddle. Much to our delight, she has been exactly the same for us when we come home. She is so much fun to be around. She crawls everywhere and often hides (she likes a game of peek-a-boo) and is always pulling herself up on the furniture. The only time we ever really hear her complaining is when she wants to go for a ride in the little car. She can get pretty frustrated if we not quick to get her into the car to push her around. Sarah is talking so much now, of course, none of it makes sense to us, and she does some really funny things like flicking her tongue in and out while making noises to go with it. We are so pleased that she’s settled down at night and I really don’t mind getting up occasionally to give her a cuddle when she needs it.

As it turns out, Olivia was still fairly ill from the chemo and vomited a couple of times in the early evening, despite the anti-nausea medication we’d given her. However, overall, she has tolerated the chemo quite well.