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!

17th to 23rd June - DELAYED INTENSIFICATION - Week 22

17th to 23rd June

This week stated with me waking up on Monday morning screaming with pain and a temperature of 39.2, Mummy checked it 3 times to make sure but it was definately high. So Daddy picked up his suitcase as he was flying home on Monday afternoon and we all jumped in Grandad's car and went to the hospital AGAIN!

When I got to the hospital I had some blood tests and they took my temperature which had gone back to normal. The Doctor looked at me from top to bottom and gave me antibiotics for my mouth as I had thrush again and took a pot of spit to be tested to make sure they hadn't missed anything before. The nurses said that I looked like I was still struggling with a virus and the Doctor said if I wasn't neutopenic that I could go home. They started me on a much stronger pain killer and whilst I was at the hospital the dietitian came to see if I was eating and give Mummy some advice on feeding me to get me big and strong.

We were all worried that I was going to have to stay and Mummy had put an overnight bag in the car but guess what. Over the weekend my blood had been busy getting better and instead of having a neutrophil count of 0.03 (which was the best it had been whilst I was in hospital) it was now 3.00!!! I wasn't neutropenic and I should be able to fight a virus on my own.

Daddy had to leave after seeing the Doctor to get his flight to go home and look after my big brother Joe. I want to go home but I have to wait. Joe got his school report this week and although he is very clever I think he is talking too much at school. I will be a good girl when I go to school.

On Tuesday the nurse phoned me to say that they would wait until they saw me on Wednesday to decide if I was having my treatment and see if my temperature had settled down. I had my first nose bleed on Tuesday which I found quite exciting and a bit funny.

Wednesday was a good day. My blood was really good and I hadn't had a temperature for 24 hours and the sores had gone from my mouth. This meant that I was able to continue with my treatment and I haven't had a delay. I did have to have to have a drip for 4 hours mostly water so that the medicine wouldn't make me to poorly. When I left the hospital it was late but very sunny and whilst we waited for my Uncle to come Mummy and I sat on the grass and made daisy chains.

On Thursday, Friday and Saturday the Community Nurse came to visit me at Nana's house and gave me an injection in my wigglies. The injection makes me very tired and I still found it hard to eat but I tried very hard all week and have stated to do better and better. Although I don't like them the feed at night does make it easier to wake up in the morning and I have a bit more energy.

On Friday Nana and Grandad went to the shop to pick up a little pink fridge Mummy had ordered for me as my medicines were taking up so much room in Nana and Grandad's fridge they didn't have room for my strawberries.

Sunday was a very good day. The nurse took my wiggly out on Saturday and I got up and had 2 bowls of cereal. I even manged to go to Sunday school and although I was very tired at lunch time and didn't eat at tea time I ate and ate and ate. My Auntie came to visit and bought me an Angry Bird Balloon! And I was very happy when I spoke to Daddy, Toni and Joe on Skype.

Mum Says: Following a shaky start and having to say good bye to Gareth in the hospital our week has improved immensely. Alice won't go to bed without me as she plays with my hair to put herself to sleep (now hers is all gone) I am unable to sneak away as soon as I leave touching distance she kicks off. This is true to be honest day and night at the moment. Fortunately Mum and Dad are very understanding and are looking after the two of us very well (a little too well it will be hard to leave hotel Talbot) Alice is still extremely tired and has spent a lot of time sleeping and is taking 12 plus hours sleep every night. She  is struggling to get herself to the toilet and this is partly because she is struggling to walk. We have lots of falls and shoes are very heavy partly because of the weight she has lost. She started intensification at 13.8kg left hospital at 12.75kgs and is now 12.5kgs having said that it isn't a huge amount of weight for a child on her treatment to have lost and we have always managed to do well with eating and keeping her wight up until now so I'm hopeful she will soon pick up and with the help of the supplements put the weight back on. I am feeling more positive and we only have next weeks injections to get through until we have a week without treatment and the start of maintenance. Let's hope all goes well and we will be back in Gibraltar soon!