Back at the start of summer we had a phone call one morning (as we were literally dashing out of the door on a trip to RVI) from Leukaemia and Lymphoma Research to invite us to join some of their representatives and other families affected by leukaemia on a trip to Disneyland Paris. We could hardly believe it. Naturally, we accepted the invitation!
The Alternative Hair Show is held in London each year and is organised by Tony Rizzo. Following the death of his son, Valentino, Tony Rizzo launched the Alternative Hair Show in 1983 to help raise funds for Leukaemia & Lymphoma Research. The show raises money to send familes affected by leukaemia from around the UK to Disneyland, Paris to spend some extra special time together, as a family and with others who have been through a similar experience. I think (still not sure) that we were nominated because of our fundraising and also because we have shared our experience through the blog and through local newspaper articles and my interview on radio Cumbria.
Needless to say, we had a fabulous time. The VIP treatment was amazing. Great hotel, food, Wild West Show at night, a special meal where all the children met Minnie, Mickey and Pluto, special passes so that we didn’t have to queue for any of the rides…Wow! Annie had the best time ever (and we enjoyed it too!). We would never have thought of going to Disneyland but now Annie is crazy about Disney and it seems to have rubbed off on us too. So much so that at the end of October we took Annie to Disney on Ice in Manchester and we have booked to go to see Lion King in Edinburgh during the Christmas holiday. Disneyland really was a magical experience for us and I found myself welling up with tears all the time. When you have your head down just getting on with treatment and everything else you just don’t stop and think and realise quite what you’ve been through. Now that the end of treatment is (fingers and toes crossed) almost in sight, the enormity of what we have been through is starting to hit us.
We are still talking about the trip most days and thanks to the joy of youtube Annie can watch the parade and lights/fireworks show whenever she likes…which is quite often! We feel incredibly lucky to have been chosen to go and will remember the trip for a very long time to come.
Hoping to bring things uo to date by starting with a couple of photos of the winning entry in The Great Sunflower Race 2013. The Evans family from Calthwaite won with their sunflower measuring 292cm. Our own were nowhere near that but they were incredibly beautiful and attracted so many bees into the garden. We sold about 400 packs of seeds. Thank you so much to everyone who took part and helped us raise money for Leukaemia and Lymphoma Research. We hope that you enjoyed growing your sunflowers as much as we did.
Tired out in the Ellwood house right now. Annie’s monthly dose of steroids has been increased due to her increase in weight and height. Although she is exhausted all the time the steroids are keeping her awake and she has hardly known what to do with herself. Not great when she is recovering from our trip to Disneyland Paris and has started school all in the same week.
Despite tiredness, school is going well and she comes home saying “I had a great time”. Such a relief to hear. I’m sure most parents are the same when their child starts school but I just worry from the moment she goes ’til when she gets back. Friday and Monday especially so as I knew the steroids were making her feel rubbish. Annie’s teacher suggested I should bring her home (gladly, because I was so worried) when I went to give her her medicine yesterday because she just hadn’t been joining in at all. After another bad night lastnight I decided to keep her at home today. Steroids now finished for this month. Back to school tomorrow.
Annie started back at ballet on Saturday and, for the first time ever, danced for the whole lesson without needing a rest.
Swimming lessons without me in the pool with her started tonight. She did so well. Even jumped into a hoop in the pool on her own and then swam under it.
Very, very proud of her.
We have just had a lovely week in a caravan in Northumberland thanks to a Children’s Cancer charity who own the caravan on a site there. It fell during the week that Annie was on steroids so the first few days were a bit tricky but Annie was happy playing on the beautiful beach that was a short walk down the road. We managed to get out on the beach every day and had mostly good weather. Annie and Rob even dipped in the sea very briefly! Had good trips out to Warkworth Castle, Alnwick Garden and a fab day on the very pretty beach at Alnmouth. Unfortunately have all come home tired out as we just failed miserably to get a half decent nights sleep in the caravan. As with most caravan parks, ours had ‘the club house’, which, much to our amazement Annie LOVED! She was up dancing by herself every night and by Wednesday she was called up on stage and presented with the best dancer certificate! We were joined for the night by my cousin Karon, Sean and the boys. It was fun to have them to visit. We were really pleased to see Annie making friends with other children on the beach and in the caravan park. Her treatment has made her cling to us quite a bit and not tend to socialise so easily with other children. A big relief to see her being more sociable and confident when starting school is getting so near.
Excuse grainy photos – trying to get to grips with a different camera!
As it was my 40th at the end of July we got tickets for all of us to go to Kendal Calling festival which is held over three days in Lowther Park just a few miles from where we live. Annie came with us in the day and then family and friends looked after her at night so that we could stay until late. We had a great time and Annie is a born festival-goer! She loved dancing to the bands, was fearless on the ferris wheel and loved all the festival novelties like face-painting, feathers in her hair and temporary tatoos (it cost us a fortune).
She particularly loved Riot Jazz Brass Band and their CD has been on constantly in our car ever since…and we all now know what a sousamaphone is! http://riotjazz.bandcamp.com/
The past three months have just flown by. June and the beginning of July was a testing time for us as Annie was generally tantrum-prone which made the days long, tiring and hard work. We were reassured by various people at hospital, including child psychologist, that as well as being a bit of general toddler behaviour most of it is caused by the medication and Annie not having any control over what happens to her. It will stop when the treatment is over (9 months to go). Annie has developed all manner of habits where she has a complete breakdown if she doesn’t do things her way which can range from having her socks pulled right up at all times to having to take all her clothes off to sit in the car and have her seat belt in a certain position. Sounds funny unless you are the one dealing with a half hour screaming fit because her sock has a slight wrinkle in it when you are trying to rush out of the house to an appointment. It has been awful. Things seem to have improved a bit over the past month or so and tantrums are less frequent and probably more steroid related now.
Annie has now finished school and is looking forward to starting at Morland primary in a few weeks time. She has me playing schools with her most days now and I have to be Mrs Bousfield, her teacher. We got her school bus pass in the post a couple of weeks ago. I can hardly imagine waving her off on the bus! She really enjoyed nursery sports day and even though her little legs haven’t got much power she had a really good go at everything.
It was Annie’s 4th birthday in July. Rather than have a party as we weren’t sure how her behaviour would be we went to Chester for the night and spent the following day at the zoo. We all had a really lovely time and the zoo was just fabulous. Annie was on her best behaviour.
We finally got away for a few days to Whitby over the weekend. Just brilliant to have some time away from having to do anything and doing absolutely nothing more than playing on the beach. Stayed in a great holiday cottage with pool in the park. Annie really getting back into swimming again and starts swimming lessons with me in with her in a couple of weeks time. Annie been a bit tired, quiet and not herself over the past week but still enjoyed being away. Blood counts had dropped last week so a bit worried they might have dropped further. Will find out at clinic tomorrow.