School holiday week

In many ways last week was a quiet week.

Nathan was on school holidays last week. Anna had no unplanned visits to Sick Kids, just the scheduled  intra muscle (peg) injection on Monday. Sore but quickly over.

We are trying to take Anna out a little bit more so we went to the park one day (what good timing to see Isla too!) and also visited my parents for an overnight stay. We do feel quite restricted in terms of going out – we have to get the balance between giving the children as normal a life as possible but always being cautious about infection. It just isn’t worth the risk.

Visitors to the house in the last week included representatives from Barnardos, social work, Council for Independent Living, outreach nurse  and OT. It is all to support and help us but we are still in the process of discussion to make sure the help we are getting is what we want.

Medicines have been light this week, probably one of her lightest weeks since treatment began. Antibiotics Mon & Tue, stomach protector and fluoride daily, and chemotherapy every day. Although she is not on steroids this week, the effects are definitely still there. She  still has nightly hunger, irrational behaviour and general mood swings. My sister Clare said it sounded like a child at the end of their tether and that is exactly it…but for hours at a time and the knowledge that it will happen all over again the next day.

Luckily, she didn’t show Grandma and Grandad any of this behaviour on our mid-week overnight stay. She was at her best most gorgeous self! She is still very weak but certainly keen and willing to do more. At the moment, she is able to stand (with full support) for as much as 20 seconds when transferring from sofa, chair or bed to us. It may not sound much but this is an improvement.

Peter and I have been choked with the cold this week. No matter how much we try to avoid infection, it sometimes can’t be helped. Our main aim is then not to give it to Anna and Nathan. Presumably it isn’t flu as we have all had our jabs now. I think we are just exhausted and not able to fight off infections ourselves.

Although we didn’t get out as much as we had hoped, it was lovely just to spend time all four of us together, and reassuring for Nathan, who is continuing to deal with all of this in the most fantastic way. Even when Anna is at her grumpiest, he is patient and kind (teacher material…?).

Re our cancelled trip to Disneyland, Paris, Easyjet refunded all of our flights. Thomas Cook felt unable to go out with their refund policy, although individual staff really tried to help out as much as they could. However, we do have enough vouchers to maybe go and stay in a nice hotel for a night (or longer if we think we can manage that…).

Today, Anna and I headed off to Sick Kids at 7.15 am for her to have a general anaesthetic and chemotherapy injected into spine and brain fluid. The steroids effect hasn’t worn off from last week (and we start it all over again tomorrow) so not only was she irrationally hungry, she had to fast from midnight. So she was ABSOLUTELY STARVING… and she didn’t hold back in telling everyone about it.  She screamed almost non stop from our arrival at 8.15 until she was taken into theatre at 10.30am. It was hard going! Poor, poor Anna. That really is too much to ask of a little girl. We had to go to the day care unit as Ward 2 was full. So no-one knew Anna and her particular ways and they didn’t really see her at her best. However, the good news is that there are no more theatre procedures (planned) for another 6 weeks.

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