8th - 21st July - MAINTENANCE - Weeks 25 & 26

8th - 21st July

I've had an exciting couple of weeks because my Big Brother Joe and my Big Sister Toni have been here on a visit.

 

We have been treating it like out summer holiday so I have eaten lots of ice cream and been to visit exciting places and have been having late nights.

Unfortunately I have still had to go to the hospital. On the first Wednesday Toni and Joe came with me. It was my first appointment in maintenance and I had to have my wigglies in to have an injection and I was given my horrible grumpy, shout-ie minty medicine, it is called a steroid and I don't like taking it and Mummy doesn't like the way it makes me act when I do. I was suppose to start my brown bed time medicine too but my neutrophil count wasn't high enough. I didn't really mind because sometimes I get very hungry on steroids and I have to go without food for an hour before and after my brown medicine which can be a long time to wait when you are so very hungry like me.

I have been very angry for the last couple of weeks I don't mean to be but everything is making me mad. And I am always hungry and a little bit tired and my minty medicine makes it hard to sleep and I have so many exciting things happening! Mummy makes me sit in time out a lot at the moment and that also makes me mad.

I went on the train for a day trip with Mummy and Everyone which was really good a bit tiring but we had fun. It took us a long time to find somewhere to have lunch so Mummy and Nana decided that we would always take a picnic with us when we are out for days. I made a wish in a wishing well and saw teddies being turned to stone by water!

When we spent the day in the park and at my Aunties house I did very well and tired my very hardest to be a Please and Thank You, Caring Sharing Alice! I played and played and played all day and it was so much fun. On Sunday I was VERY tired and slept a lot but it was worth it. My legs hurt on Monday morning too.
 
Because my blood hadn't been very good and I couldn't start my brown medicine I had to go back to the hospital on the second Wednesday for more blood tests. Mummy spent a long time talking to the Doctors and my key worker. AGAIN my blood wasn't good enough to start on my Brown medicine and this is now stopping us going home. I've got to be settled on in for about 4 weeks. We are also waiting for a result on a test they took for Parvovirus as it might be back and making my blood poorly again. The good new is that I have put more weight on and I'm now the right weight for my height for the first time since I was first ill. The Dietician is going to talk to Mummy about my height and weight so I don't get too big and fat from the steroids!

We went to paint mugs in the village for my BIG Sister as she start University in September and my brother and I thought she would like to remember us every time she has a cup of tea!

Unfortunately Mummy tells me things are going to have to get back to normal with bedtimes and eating and everything. That doesn't make me happy at all. At least Joe is still here to play with.

Mum Says: We have had a lovely couple of weeks with the children. It has been so wonderful having the 3 of them with me. I have missed the older 2 so much and I have just enjoyed having them here. We are trying to treat Alice more normally, taking the layers of cotton wool off and getting her out and about a bit more, despite her low blood counts as they aren't going to be great for the next 2 years and we want her starting school and enjoying her life again and we will just have to accept illness and hospital stays may be part of it.  Alice's behaviour has been challenging and I am having to put up with a lot of tantrums (like TV toddler from hell tantrums), partly because of the drugs, partly because of the time she has spent in hospital and partly because she has become a little madam! I'm hoping by tackling it now we won't send a completely unruly child to school in September!

 

1st to 7th July - DELAYED INTENSIFICATION - Week 24

1st to 7th July

This week was a week off for me. I didn't have to go to the hospital and I'd finished my injections. I think it would have been really nice to feel really well but I didn't really feel very good. I spent a lot of time being grumpy and sleepy. I have been eating lots of cheesie pasta this week I've tried other food but thats my favourite.

On Tuesday I had to go to the doctor because I hadn't been feeling well in the night. I was shouting and crying. Sometimes it was because I was not well and sometimes it was because I was asleep. When I was asleep I told Mummy that I didn't want flat pancakes I wanted little fat ones instead. I was scared of going to the Doctors because I always have to stay in hospital when I'm not well. This time it was OK and I didn't even have medicine.

Wednesday my My big cousin came to visit and eat lunch with us because she is going to Africa on Sunday for two weeks, she also wanted to practice driving now she has passed her test.

My big brother was playing in a concert at school  on Wednesday night and mummy and I weren't going. We went last year and it was really good so we were a bit sad to be missing it this year. My Aunties sent lots of photos on Wednesday night and Thursday but the best was the video Daddy sent which I watched lots and lots and lots!

On Thursday I was tired and extra grumpy but I really wanted to see my little cousin so we invited her to play on Friday. Unfortunately she didn't get to come over. When I had my bath my Mummy noticed lots of tiny bruises on my legs feet and head. When I cleaned my teeth my gums bled a bit and I had started to get a blood blister on my lip.

By Friday when I woke up I had a little petechial rash on my arm and knee. Not much but Mummy called the hospital to see what we should do. They wanted to see me and take some blood. When we got the results my platlets were low and I was very anemic. That might explaine why I had the grumps so badly this week. So Friday I spent the day having platelets and red medicine (blood transfusion). I have also eaten so well that I am now the same weight I was before I was ill in hospital.

When I woke up Saturday morning I felt so much better. It was hot and sunny and I wanted to go out. We went to the village to buy yogurt and we took my books back to the library. I am waiting for my brother Joe to come before I choose new books. He might like to get some too.

Because it was hot Mummy bought me an ice cream!

Sunday was really exciting I was able to go to Sunday school, Grandad took us to church but he didn't stay he went to see my cousin playing cricket so my Auntie collected us from church and had her lunch at Nana's house. It was really hot and sunny and we went to the village with my Aunties, Uncle, Nana, Mummy and little cousin to see a Duck Race, they tipped lots of ducks into the river and the first one to cross the finish line won some moneh. The last one won a personal trainer. We didn't win anything. I did get to go on some fairground rides with my little cousin. Even though I'd had my red medicine I was very tired after my busy day and fell fast asleep on my way home!

Mummy had an email from Gibraltar this week to say they are ready for me coming back for maintenance. So when we were at the hospital and Mummy saw my key worker they talked a lot about getting us home. I miss home a lot at the moment.

Mum Says: This week I was begging to dispare Alice was just grumpy and evertime we thought about doing anything she was sleepy and bad tempered putting me off of even attempting to go anywhere with her. When she had to go to the hospital Friday I didn't expect to be long platelets onlt take about half an hour to transfuse, it was quite disheartening to find out she needed blood too which takes about 3 hours. It was obviously exactly what she needed as she had bounced back once again and as we head to maintenance I can feel optimistic that we will do much better now and be at home too!
I feel terrible that I have missed both Joe's birthday and school concert this year. Can't wait to get back to normal now!

24th to 30th June - DELAYED INTENSIFICATION - Week 23

24th to 30th June

My week started well. My little cousin came to play all day. We made lots of mess with feathers and glitter and glue. I made peg dolls

and we both made fridge magnets. We had tea together and I gave my cousin a onesie I'd grown out of to wear home after our bath! My cousin had made us all a little cake which I really enjoyed eating.

On Tuesday we went to the library which was really good. I borrowed a cookery book to see if making new food might help me to eat more and 3 story books. I walked a long way into town with my toy pushchair. It made me very tired and my legs hurt but I was very proud of myself. I wanted to stay in town for a drink but Mummy said no. That made me very grumpy and I shouted a lot. We still went home.

Wednesday was hospital day. I was supposed to be going in for a quick appointment, to have my wigglies in and an injection. My Auntie took me and Mummy. When I had my blood tested I was very anaemic and had to have a blood transfusion. As we were already there and it was early we decided to wait and have it on the same day. My key worker came and spoke to Mummy to see how we were and to find out if we'd heard from the hospital in Gibraltar at all, about us going home and about Maintenance! Mummy was very pleased to get a bit of paper from the Doctor explaining maintenance. The Dietitian also came to see us. She is very happy I've put weight on 400 grams in a week. I only have 3 more night feeds and I should be able to stop as long as I keep trying to eat! My Auntie stayed with Mummy and me at the hospital all day and we played games together whilst I had my blood. Mummy had to buy me chips because she hadn't bought any lunch for me. I didn't mind at all.

My big cousin passed her driving test on Wednesday so I made her a card. I was very pleased with it when it was finished 

Because I am very neutropenic again and the nurses are coming to our house everyday to give me an injection we haven't done very much. I have been more busy playing with my toys and making things. I am even able to sit on the floor to play and get myself up without (much) help.

The injections still make me tired and on Thursday I was very sick. In fact I was so sick my tube came out again. This time I promised Mummy I would take my medicine's very nicely (I don't have so many now) and that I would eat and drink very well. So she didn't ask the nurse to put the tube back in. Although I shouted so much about about Mummy getting the wrong top out on Friday Nana thought my tube was being put back in.

I find it hard to sleep some nights and am starting to really want to get home. I really don't like being sick anymore. 

Still on Sunday I went to my Aunties house and played in her garden, chased her cat, played Cooking Mamma on the WII and had my toenails painted blue! Very exciting.

Mum Says: We have started to see some improvements with Alice this week. It is always good when things improve like putting on weight. I am still continuously worried about her temperature, bruising, bleeding and weight, diet and mood swings. Alice is not quite herself and it is now that I begin to wonder if she will ever quite get back to how she was before. Alice has started to talk more about everything and it is amazing how much she knows and remembers about what is happening to her.  On a positive note we are now heading towards her maintenance and it feels like we are moving more rapidly towards the light at the end of the tunnel. Unfortunately it also means working out what needs to get back to Gibraltar and how it is going to get there. It is amazing how much stuff you can accumulate in 20 odd weeks!