It’s been a difficult week for all of us. The build-up of drugs in Annie’s system and the high dose of steroids left her feeling dreadful. We have been up and down all night long with her since last Thursday. Annie has been drinking at least two litres of milk a day but had no appetite for food, so has been feeling hungry and unsettled. Whenever she got off to sleep she would only last 45 minutes or so before she needed to go to the loo with the amount of drinks that she was getting through and then felt like she needed hours of cuddles.
We had an overnight stay in RVI on Monday night as when we took her in to check all was as it should be and the doctors thought it best to keep her in for observation. They said that most children become very ill at this stage and have to be admitted. I stayed with her and after an awful sleepless night in there she was discharged at lunch time Tues. Although they didn’t find any one particular thing wrong it was a relief to have her thoroughly checked out as we were getting quite panicky.
She had her last dose of steroids yesterday morning and had a better night last night and has been much more like herself today. She’s been playing and making up stories to tell her doll all day and I don’t think she’s needed a cuddle once since she got up. Annie’s appetite has returned and although she’s only eating a very limited range of things, it’s great to have her asking for more food!
It’s Annie’s birthday today but it’s been a difficult day. She hasn’t felt well and has been pale, tearful and hardly knowing what she wants. She’s been upset about wanting something to eat but not fancying anything and hasn’t been very interested in her birthday presents which isn’t like her at all. She had more chemo yesterday and is back on steroids and it’s all caught up with her. Having her wiggle (line that goes into her porta cath in her chest) put in has become so traumatic for her that a child psychologist came to speak to us yesterday. Next time we go for treatment Annie will take Henry, her teddy and she will put a wiggle into his chest and then she will have Henry watching while she has hers in. Not sure it will work but it’s worth a go. We got Annie a bike for her birthday and gave it to her last night and she had a great time whizzing around, really pleased with herself. She hasn’t felt up to much biking today but I managed to get a couple of birthday photos while she was more perky.
Despite being warned at hospital last week that Annie would soon start to feel worse she was quite well for most of the weekend but by Sunday afternoon treatment was catching up with her and she has gone from being hyper one minute to having screaming fits and being in floods of tears the next. She has also become tired and in need of cuddles from me most of the time. She’s off steroids this week but back onto the high dose for a week after more chemo this coming Thursday.
We went to Langwathby scarecrow festival on Sunday where she was keen to have a go on the bouncy castle and merry-go-round and today we went over to Orton with Anna and Annie Miller to have a look at Uncle Craig’s litter of 10 piglets which arrived last night. Annie really loved the piglets. Charlotte’s Web is one of her favourite films so she wanted the runt to be called Wilbur the same as the one in the film.
Almost two weeks gone of this phase of treatment now. Just counting down the weeks until it’s over.
Annie is doing surprisingly well despite the big increase in treatment since last Thursday. We were back at Newcastle yesterday for more chemo. Just an injection in the top of her leg which is less traumatic for her than having to have her “wiggle” inserted into her porta cath and taken out again for treatment through a line. The increase in steroids has noticeably started taking effect today with increase in appetite and thirst and we have had interrupted nights with general unease and needing the toilet. Thankfully we haven’t had any midnight feasting yet. This course of steroids is just for a week so things wont get as bad as first time round. We then have a week off them then a week back on. During the day despite needing lots of cuddles and wanting to be on my knee a lot of the time, Annie is playing away quite happily. She was given some birthday presents at her party and so we’ve been giving her them gradually so that she gets to enjoy each one. Back at Newcastle Thurs for clinic and two x IV chemo.
All went smoothly today. Annie had Lumbar Puncture and three types of chemo. She was very drowsy on the way home and said she didn’t feel well but has been ok since we got back and has just trotted off next door to Nanna’s. We have just given her a larger dose of steroid than she has had so far which she is on for the next seven days as well as anti-sickness medicine, medicine to protect her stomach and medicine to help with the leg pains that she gets following treatment. Ten doses of medicine per day. Fingers crossed for a good nights sleep tonight.
As Annie is due to start an intensive period of treatment on Thursday we had her birthday party a couple of weeks early at Morland village hall on Sunday. The theme was Pirates and Princesses although there was more enthusiasm about pirates than princesses, especially as far as the adults were concerned. It was chaos, but Annie had a great time. Ullswater Steamers kindly loaned us their pirate costumes and decorations (if any parents are looking for something to do with kids in August try the Steamers pirate event, its brilliant). Thanks to everyone who helped get it all together. It seemed to be a lot of work for a few hours of madness but we hope you enjoyed it.
Planning the party took our minds off the heavy treatment that lies ahead over the next couple of months. It now feels like we are just counting down the days til it all starts again on Thursday. We just have to look forward to September when it will be over and we can start getting back to Annie being well again.
This was our train home from Newcastle last Thursday. Mam came to hospital with me and Annie and we went by train from Carlisle as we’ve found it’s easier than driving on the days when Annie is not having treatment. All was going very smoothly until the return journey home when the sky turned black and we got to Haltwhistle to be told that the train had stopped as there was a flood on the line ahead of us and a flood on the line behind us. By the time we were told we would have to go back to Newcastle the flood had come along the line and under the train and was flowing down the track very quickly. Five hours after we set off from Newcastle we arrived back at Newcastle where there were no trains leaving and the roads were at a complete standstill following the torrential rain they had after we left. The station and street outside was absolute chaos. We made a dash out of the station to get booked into a hotel as soon as we could. We managed to get the last room at the second place we tried, the trendy Hotel Indigo which was having a flashy opening night with fire eaters, people on stilts, D.J., champagne cocktails, etc. Everyone there was all dressed up in black dresses and smart suits so us weary travellers looked more bedraggled than ever wheeling through with our pushchair and bags of Annie’s paraphernalia! By the time we went out for supper there were people looking lost with suitcases all over the city centre. We were relieved to have found a room and especially relieved than Annie hadn’t had any treatment that day and that she was ok. Annie was really good the whole time and can give a great account of our adventure! Trains were running again next morning and we were glad to arrive home just after lunch time, 24 hours after we first set off!!