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!
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.
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.
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!
Oh I'm so glad to hear she is picking up again and hope to see you home again soon lots of love Belinda x x x x. X x x x thinking of you both always.
ReplyDeleteThank you both very much for letting us share your blog