5 year old anger management..!

The last week has been dominated by one word..Steroids! The aim of the steroids is to reduce the swelling around the Tumour and therefore reduce the pressure on the brain tissue, hopefully improving some of the symptoms of unsteadiness and facial weakness Anouk has been experiencing.

So the upside is that this week is that she has been much less unsteady on her feet. Anouk went to ballet and tap dancing which seemed to be out of the question a week ago, she has also not complained of any dizzy spells this week as we have been placing Hyoscine anti motion sickness patches on the back of her neck. However her face has remained unchanged and she has developed some more signs of pressure in other areas of the brain, with some blurred vision thanks to a squiffy eye.

The very big downside has been a severe case of 5yo anger. The top 5 yelled statements in the van't Riet household this week were ..."I'M NOT LISTENING TO YOU", "GO AWAY", "I HATE THEM", " SHUT UP" & "YOU'RE STUPID". This has been coupled with screaming demands for the impossible at that second including things such as.". I want to make a robot that moves out of some cardboard and a few empty tins". As much as we wanted to we could not pull that one off and so the volume got louder and more insistent. This grumpiness and disrupted sleep are the well know side effects of steroids at high doses. It isn't pretty when she is kicking off, she's not herself. We had aimed to improve her quality of life by putting her on this round of steroids but unfortunately the physical improvements have come at a high cost and there has certainly not been an improvement in life quality - we are hoping that that will come this week once the drugs are out of her system. I have suggested she's a bit like her mother at times.... this hasn't gone down well!

So this is made for an ongoing debate in our house, is it worth continue with the Steroids which give her more physical freedom but at the same time make it very difficult for us to cope with her anger & erratic sleep patterns and make her feel unhappy. In the end we did continue, missing only the last dose - but we would have to think carefully before giving them another go...

At school her balance & attention has been fine & Mrs Wonder Wheels was given a break for a few days. She enjoys being with her friends and has had no problems with behaviour at school. She seems to hold it together with other people, but is becoming more tired and so we may have to reduce her time at school this week.

Even our local doctors were not sparred the delights of Anouk's temperamental mood swings. We are getting great support from the local Medical Practice and the doctors are kind and very professional as are all the medical staff involved in Anouks care, so it was a tad uncomfortable when they came to see us on Friday morning and Anouk barricaded herself into her room. When Catherine was asking her why she wouldn't come out & she replied.."I HATE THEM"! One of the doctors then gently approached her door to tell her how much she had enjoyed seeing a video of her dancing... Anouk cut her off after a few words.."I'M NOT LISTENING"...coffee anyone?

The worst thing about this week is for the first time we have seen Anouk's delightful and easy going personality affected by her disease and this is confronting and upsetting for us and we are sure that it is very difficult for her.

Despite all of this we have kept life as normal, some friend from her class with Mums and some Dads went to pizza express on Friday night and on Saturday we went to watch Richard and friends at Band rehearsal and then over to Chiddingfold to friends for lunch. Anouk was quite clingy at both dos but got the occasional burst of energy. Neave loved running around and making assault courses in the garden with her friends.

On Sunday Anouk decided to treat her Father for his Birthday by getting him up at 4am..great. She was however very good once we calmed her down, and got a DVD into the laptop , mum & dad swapped beds before the 6am shift started after 2 hours of Charlie & Lola. We then had a lovely birthday breakfast with all 13 members of the extended family now living in Ewhurst, played with the cousins, fitted in a 45 minute strop courtesy of Anouk and then she was rejuvenated by a 5 minute power nap sufficient to get the the pub for lunch and back home for cake.

Anouk has had a planned day off school today and we took her to The Spectrum a swimming pool with slides etc and she loved it, she was back to herself... (but the wobbles are coming back).

Neave has had a great week, she is really enjoying school and school has been wonderfully supportive of her. We proudly attended her Friday assembly to watch her get her star of the week award which was awarded because"her positive attitude to all areas of school work make her a fantastic role model for the class". She stood in front of the school as she took the award and lit up the room with one of her amazing smiles. She is learning all about the Egyptians and had a visit from someone from horrible histories on Tuesday, she announced at 7.30 am that she needed to dress as an Egyptian for the day (there was obviously a letter we didn't read / lost!). We raided the dressing up box and managed to transform her into a passable Egyptian and then I spend all day worrying that she would be the only year 3 dressed in white with a sash around her waist. She seems to be coping well this week & we have explained the reasons for Anouks erratic behaviour & she accepted this and has generally tried to jolly her out of her moods.

Even though Catherine & I haven't been in celebratory moods with our Birthdays, we have had some great family time & are still lucky to be enjoying this time with Anouk. As you can probably gather if it is at all possible, we might be giving Steroids a miss from now on!