Showing posts with label neuropenia. Show all posts
Showing posts with label neuropenia. Show all posts

Wednesday, 19 February 2014

And on We Plod - Weeks 53 to 56

Things have been a bit quiet for me this month. I haven't been to school, I've been neutropenic and there is both chicken pox and swine flu going around. My teacher sent home some work for me, Mummy and I play schools in the morning. Altough I did manage to get to a ballet lesson this month.



When I had my vincristine this month I had a bit of a cold but not too much. I got very itchy and scratched up a petechial rash, so I had to have a blood test, my platelets were a bit low but not so bad that I needed topping up or anything. I wasn't feeling too good but I seemed to be doing well at fighting the virus all by myself. I had something called emzimes in my blood, from my liver, which were making me itchy, they went away all by themselves.

On Wednesday I went and had my hair cut, just a little bit but it made it all neat and tidy and I was very, very happy. I've been waiting since Christmas to go and have it done! I was doing really well and seemed much better. But when I went to bed my temperature went very high and I had to go to hospital, again. Daddy had a sleep over with me on Friday night which is always exciting, but I had to have another blood transfusion on Friday too. Mummy and Daddy weren't very surprised I'd been super grumpy! The best most exciting bit about being in hospital this time was making a tent in my room with blankets. I tried to sleep in it but the floor was too cold and  hard and it was just too exciting!

Because I had been in hospital we had to cancel going out for Nana's birthday. Luckily there are lots of birthday's in February. So we did go out for my Uncles birthday and at night, in the dark AND we went on another day when I was feeling better for Lunch with Nana.

But the most exciting thing to happen this month was my friend Nurse had a baby! It was a little girl and she was born whilst I was staying on Rainbow Ward.  When I was having my IVIG the next week my friend Nurse bought the baby to hospital and she let me hold her for so long I was very happy and I told my Daddy that we could have a baby and it could sleep in the lounge or maybe next to me in my room, except Toni has to sleep there. Daddy said NO, absolutely not.

Mum Says: We are getting used to our trips in and out of hospital, Alice makes a fuss to start off with but is happy enough when she gets there generally and we are getting good at finding ways to fill our time. Fortunately Gibraltar being small means that I get time away from the ward when my Mother-in-law comes and stays with Alice and Gareth pops in during his lunch time. This month has dragged a bit for  us stuck in the house because it's been wet and windy and a bit unpleasant outside. I've been a bit under the weather too and on antibiotics so that has also made the month drag a bit for us. Alice's new hair has started tinning a bit this month which is depressing for us , Gareth is most upset as it's his job to bath her and wash her hair each evening and that tends to be when it comes out, having said that Alice really doesn't care! Still we are hoping things improve now and we get back to school and 'normal'. Still being at home has meant that we have worked on Alice's behaviour and she is sleeping in her bed on her own more often.YAY sleep!



Tuesday, 28 May 2013

4th to 19 th May - INTERIM MAINTENANCE - Weeks 16 & 17

4th to 19th May

Well we made it home to Gibraltar and to my house and my toys and my family! It is always exciting to see Joe and Toni and Daddy. I made Daddy do everything for me when I got home and I went out on my bike and played and played and played.
My blood wasn't very well so I had to be careful of infections so I didn't have a big party or anything when I got home like last time with the family. Nana and Alfred came to lunch on Sunday and that was really nice, Toni had to work but I had spent Saturday with her and she had come to collect me from the airport with Daddy.

On Monday I went to visit the hospital to arrange a blood test and to see the Doctors. It was really nice to see my friends again at Rainbow Ward. We had a quiet day at home so that Mummy could start sorting out the house. Daddy and Toni had painted the lounge for Mummy as a surprise. I think she was very surprised.

On Tuesday I woke up with a swollen face so Mummy and Daddy had to take me back to Rainbow Ward. It wasn't quite as fun to go back this time and I had to have jelly on my face to see what the gland looked like and blood tests. I was sent home with antibiotics and instructions from the Doctor to come back if it got worse. ... It got worse!

Tuesday night/ Wednesday morning my temperature went up and my face got fatter and I got worse so Mummy and Daddy took me back early in the morning to see the Doctor. I had to have more blood tests and IV antibiotics so that meant I was in Hospital until Saturday Morning. Not the holiday we'd planned. Although I had visitors like Nana and Alfred, Daddy, Joe and Toni and my Uncle came in his army clothes and bought me sweeties.

When I got out of hospital I went to my Nana's house for tea and on Sunday my cousin came to visit and we had a party for our lunch with Pizza and crisps and sweeties. That was fun. My other cousin came to play on Monday, she ran around so much with our cat that the cat slept for a long time after she went home. On Tuesday my blood was not very well so I had to stay at home most of the time.  

I also went to Nana's house and played all day with her and Alfred on Friday so Mummy and Daddy could go out for lunch or something, with out me!

Mummy, Daddy and Joe did take me to the beach for a little while in the morning because it was nice and sunny and my Aunties and Uncles came with my cousin for the afternoon on Sunday.




Mum Says: Well I suppose this visit just goes to show that when we try to plan to far ahead with Alice like she is at the moment it will come back and bite us on the bum! We will have to get used to these little set backs/upsets over the next couple of years. So I didn't manage to see even half the people I wanted to and I am sorry to anyone I was hoping to see and just didn't get to. I don't think many people even knew we had arrived and we left so quickly because of the next stage of her treatment starting! It was nice to see the few people we did. And great to see the family. It was a real surprise to come back to a painted lounge and I had plenty of time to start sorting out the house and things which I had put off because of Christmas and obviously by May were long overdue! I did manage to spend some time with both Joe and Toni individually whilst I was home which was great as well as going out with Gareth!

 

Friday, 15 February 2013

I'm a puzzle

I carried on having blood tests everyweek on a Monday. Some got better but mostly they got worse. 

The week before Christmas I think about 17th December I was very ill again and had to have another blood transfusion and some immunoglobulin. 

I had been tested for a virus called the Parvovirus and it was positive,but I just wasn't managing to fight it off myself. At Christmas we had to stay away from lots of people and shops because I was suffering from Neutropenia and it meant that I couldn't fight infections.


The Doctors were puzzled by what was happening to me. I carried on having blood tests every Monday with my friend Audrey at the hospital.

Looking for a carrot for Rudolf




I had fun at Christmas with my family and I got a new scooter!






  




Kim Says:  We had decided to make Christmas really quiet and special this year. Although we couldn't have lots of people over we managed to go out a little bit everyday when it was quiet with Alice and her scooter or her bike. The other children did all they could to help us make Christmas great and after all the worry it was a relief to have something to celebrate! It did look like there was an improvement on New Years Eve which gave us one night of relaxation at least. We knew that the way things were we could be facing a challanging 2013!