The beginning of the strange, stiff school uniform poses!
Enjoying playing in the sand
All went smoothly at Newcastle last week and Annie has come off two types of medicine which is 5 doses less per day to deal with. It’s great to have less medicines to coax her to take. Although Annie wasn’t up to nursery on Friday following Thursday’s treatment, by Saturday she was well and truly ready for the disco/hog roast being held at Cliburn in aid of nursery. She was desperate for it to be disco time all day. We were really pleased to see Cerys there with her dad and his family from Great Strickland. Annie knows Cerys from hospital, she is just a few weeks away from the end of her treatment for leukaemia. The two of them had a good old whizz around together. Annie was quite anxious and looking for us every other minute but she was keen to be up and dancing or running around outside.
Sunday, Monday and Tuesday weren’t great as Annie has already managed to pick up a cold and on top of that was probably exhausted from such a big week the week before. So we have had a few days of cuddles. With the pouring rain it’s been the best thing to do anyway.
Annie’s hair is now coming back at quite a rate. It really seems to be growing before our eyes!
We bought Annie a trampoline out of the paper last week and she has been having a fabulous time on it when she’s been up to it. It’s a job to get her into the house now that she has to go past it when we come home from anywhere!
Annie started back at Nursery yesterday. We are all thrilled about it. Annie absolutely loves it there and has quickly made new friends as friends from before she was diagnosed have now moved on up into school. She just went for a short while yesterday morning but came home fit to burst with excitement about it. Her first words at 7.15a.m. today were “who’s taking me to nursery today?” We bought new shoes and uniform yesterday afternoon and she thinks she is IT in them! Even wanted to sleep in school skirt and tights last night! We had half an hour of sitting waiting with her coat and hat on before we could set off this morning! All great to see and a big relief that she has gone off so easily after six months mostly with me. I’m loving having the chance to have a bit of time to get things done at home in the morning. The days have been very long in recent months with non-stop demands for attention from the moment we get up and no time to do anything else.
All went well at clinic last week. We were given some medicine to settle Annie back into a normal sleep pattern as we were having very late nights with her and then Annie was waking up for hours on end in the middle of the night and just couldn’t settle back off, so neither could we. Poor Rob was going on drives with her at 4a.m. to try to settle her off. Sleep routine seems to be improving although she has still been waking up at 2a.m. a bit but then settling back off.
Back at Newcastle Thursday and in theatre for lumbar puncture.
Annie finally started maintenance yesterday as her blood tests showed everything to be at a good enough level for her to be able to cope with chemotherapy. We had a good couple of weeks until a rash started to appear on her face on Sunday so on Monday a.m. I called and spoke to a doctor at Newcastle who advised us that patients can get all kinds of rashes at different times and that as there were no other symptoms he was not concerned. By yesterday morning when we got her out of bed she looked like her entire head had been scalded. It was dreadful. I phoned and asked if we could take her in to be seen. Although they agreed the rash was quite spectacular, following blood tests they found all to be otherwise well and started her on her maintenance treatment which includes 5 days of steroids which I am told will deal with whatever is causing the rash. It has gone down significantly but in the past hour all around her eyes has come up bright red! There is always another thing to worry about!!!
There have been moments of Annie having really awful temper tantrums over the past couple of weeks which are very difficult to deal with as there is just no getting through to her. Dr Skinner reassured me that this is quite normal following the amount of treatment and hospital visits over the summer.
During the past 10 days or so Annie must have been feeling so much better as she has been running around actually shouting “I feel better!” and is just so happy that she can run again. She’s also been really bouncing on the little trampoline next door and striking poses and showing off balancing on one leg now that she can balance again. For her to recognise how much better she is feeling now must mean that she really did feel awful before. Although we knew she wouldn’t be feeling well she never complained of feeling unwell but was just in need of lots of cuddles.
We’ve had some nice days out and about fishing at Orton with cousins and Anna and the Miller children, paddling and building sandcastles at Morecambe and a trip to the theatre at Rheged to see a Blunderbus production of The Selfish Crocodile. We need to wait until the rash has gone and we have met with Dr Skinner next week to find out if we are ok to start sending Annie to nursery. Although she is enrolled for 5 mornings it could just be that she goes for odd hours here and there until she’s up to it. I will just be lovely to see her going off and doing normal stuff with other kids again.