10th to 16th June - DELAYED INTENSIFICATION -Week 21

10th to 16th  June

Well I've not really been feeling myself again this week. Monday was quite exciting because my Daddy arrived. He came to see me at the hospital. I had been well enough to decorate a birthday cake for him in the morning and I had made a card and a present for him when I was feeling well so I had everything ready!

On Monday my Doctor had been to talk to Mummy as my heart rate was still not very good although it was getting better. She decided that I should have some tests done just to make sure they weren't missing anything important. She also said I'd have some magic milk so it wouldn't be so frightening.

The Dietitian also also came to see me because I had not eaten anything properly for a week and I lost lots of weight. They gave me me some special feed to have at night in my NG Tube. I don't like it and I don't want to keep having it!

I have tried to eat. I especially wanted to make Daddy happy!!

I have mostly spent my week in my room. Mummy  and Daddy have been trying to play with me and do things to cheer me up. Daddy mostly does things that are silly and gets into trouble from Mummy. He does cheer me up the most though! We have mostly been waiting!

I had tests an MRI an ECG and a Lumber Puncture. On Thursday the doctors came to speak to Mummy and Daddy again. All my tests were good and nothing bad showed up. They think probably the problem was from one of my drugs and wouldn't happen again. They also said that even though my blood wasn't great because I hadn't had a temperature and I'd finished 2 courses of antibiotics that I could go home!

On Thursday afternoon when Daddy was looking after my by himself I started to cough a lot and I was sick. I was so sick that my NG Tube came out of my tummy and out of my mouth. Daddy took it out out which made me happy for a little while. The Nurse put it back in because I still need it for food and medicine.

All my friends from the hospital came to visit me. My friend with her guitar, my friend with the painting stuff and DS games AND my friend with the milkshake as well as the nice lady who came and cleaned  my room everyday AND my Nana and Grandad.

I still wasn't feeling my best and I still wasn't eating but going home was very good news!

On Saturday Daddy took me and my Mummy for a drive in Grandad's car. It was quite windy and the wind made a lot of noise. I just wanted to go home.

 

All weekend my temperature was a bit up and down but not so bad I had to go back to hospital. Mummy called because Saturday night I had been coughing and I was also sick but the ward wanted me to stay at home. Not that I wanted to go back to hospital.

On Sunday I gave Daddy and Grandad the cards I made for them in hospital.  When my uncle came to visit Grandad. Instead of being excited I was just tired and went to bed! 

Mum says: Another tiring and worrying week. It was great to catch up with Gareth and to have him to share the worry and to be able to support one another not just over the phone, Skye or text message. We mostly sat and waited. Alice is not herself and her temperature started creeping up almost the minute we left the hospital! She wasn't happy or eating! But did seem as if a weight was lifted from her almost as soon as we arrived home. We are just suffering the side affects of her treatment unfortunately she seems to have had everyone to a greater or lesser extent ! We currently have: jaw pain, an upset tummy, ulcers/sores in her mouth, her hair is gone again, she is neutropenic and lost a lot of her mobility. We are using special bedtime pants most of the time at the moment . I suppose things can only improve! This is her week off treatment, we now have to hope things improve enough next week so we don't get a delay!

Alice really tried her hardest to eat EVERY day!

3rd June to 9th June - DELAYED INTENSIFICATION - Week 20

3rd June to 9th June

This week has been rubbish. On Monday morning I took a long time to wake up and when I did Mummy took my temperature it was very high and going up! Mummy phoned the hospital and I had to go straight there.

I was admitted straight away, but I did have to wait for a long time for them to get a bed ready for me as I have to be on my own. I am very neutropenic and I have a runny nose and a cough. The nurses had to take lots of blood samples from me as well as nose swabs and mouth swabs. I wouldn't let them use the sticks unless they let me do it myself.

I have had blood tests taken every day and I have slept a lot. Mostly I am sad. I don't want to drink or eat so I have been on a drip with fluids. I have got sores in my mouth from the drugs and I had thrush in my mouth because of the neutropnia. The doctors have told us that I have a type of flu as well as a cold but I suppose when you can't fight the infection like other people you get to stay in hospital.

My blood tests haven't been very good and my temperature has taken a long time to stay down so I've had platelets and a blood transfusions!

I have had visits from my Nana and Grandad everyday and a Lady came to see me with her guitar and we sang some songs together. The candlelighters have been to visit me and they bring me toys and drawing and painting. I've even painted pasta to make a necklace. I've made my Daddy a birthday card and a Fathers Day card. I also made my Grandad a card. One of the Candlelighters is a dinner lady and she brings me sweets and crisps everyday and has made me  special milkshakes and soup to try and make me feel better. If I wasn't feeling ill I'd like her a lot!!

My Auntie has been to visit too and she bought lots of fun things to do whilst I'm in hospital. She came early on Sunday as My Mummy called her because my heart rate had been low overnight and I found it hard to wake up in the morning. I had a CT scan - it is like a big doughnut that you have to lie very still inside whilst it spins around you, I didn't like it Mummy stayed and held my hand and snuggles came with me. I also had an ECG both were fine. they have changed my antibiotics and taken me off some of my medicines to see if it helps. I think it is but I am still very tired.

Mostly Mummy has been trying to get me to eat and drink and mostly I have been saying NO!

I am getting a little bit excited as Daddy is going to visit on Monday and I am going to get to give him a big hug and a kiss! I am trying really hard to get better and go home. The doctors want to get me home as soon as they can but I'm still not very well!

Mum says: This week has been very stressful and quite scary at times, it is starting to feel more real and like we have a really sick child, but I feel as if I just stop and think about everything which is happening right now I might just be completely overwhelmed by it all. We have gone from a very sick child with a temperature. to a slightly less sick child with random temperature spikes to a sick child with no temperature but just not Our little Alice. I have been so grateful to Mum and Dad for their visits and clean underwear. I was glad to be able to call on My Sister when I was on my  own and not sure quite why Alice was going for a CT scan. Sunday morning we were kind of invaded by doctors at about 8am and it all seemed much worse and more frightening at the time than it turned out to be. I think their biggest worry was that she may have a virus affecting the fluid around her brain, they have every base covered with antibiotics and they have stopped medicines which may cause problems. I have been continuously reassured by all the staff and Doctors that this is all within the 'norm' for delayed intensification and that things will improve and they are sure she has a virus, we know she came in on Monday with a cold and now we are waiting for her to improve enough to go back to Mum's.  I think we will have to feed her through the NG Tube as she can't eat because of sores in her mouth and a week has passed with out her picking up like normal. It had looked good for us leaving on Monday now we just hope that when Gareth arrives she will be starting to feel much better.

27th May to 2nd June - DELAYED INTENSIFICATION - Week 19

27th May to 2nd June

My week started well on Monday my Auntie and big Cousin came to
collect Nana, Mummy and me and we went to build a bear! It was lots of fun and I got to choose my bear, I chose a rabbit, help to stuff
it and make a wish! I then chose lots of clothes for my new rabbit and made her a birth certificate, her name is Hayley and she is great. I'm so pleased to have a new friend.

My Auntie and cousin came home with us and had some lunch but they had to go as my cousin is taking her exams soon and needs to do lots of hard work.

I haven't really felt very well this week and ave been sleeping a lot and I've been feeling quite sick and not really eating although on Tuesday I did start eating a bit better and had Mummy making me Chinese noodles for breakfast. The weather hasn't been really good so I've not gone out very much.

Wednesday my Grandad was suppose to be watching my cousin play cricket but it rained too much for  them to play. Nana had to go into town and having been indoors too much I wanted to go to. I was very tired and cold but it was better than being at home.

This week I had the hospital on Thursday and my Auntie was off work and took me instead of my Uncle. I was very quick but Mummy was worried because I was so unwell. But my blood tests were good and we started to get quite excited as Race for Life was coming up and we actually thought we were going to be able to go and race with my cousin.

Friday I was feeling so well that I went to play with my little cousin in her back garden which was lots of fun it was really sunny and warm and I was very tired out from my visit but it was worth it!

Saturday morning didn't start well as I was sick as soon as I woke up and there was some blood so Mummy called the hospital and they asked me to go in so they could see me. We spent the whole day there and I played in the play room and painted a picture of my Daddy on the window for their Father's Day display.

When the Doctor saw me she told us that my medicine had made my tummy a bit sore and gave me some special medicine to take. But my blood results weren't very good and I wasn't going to be able to join in with the racing on Sunday.

Instead of going racing and having a picnic at my Aunties house we stayed at home and Mummy's Brother and Sister came to us to have a picnic party. I wasn't really feeling very well again and I was very quiet and a bit sad but I was very happy when we had a birthday cake with a candle for Mummy's birthday!







Mum Says: I have been really worried about Alice this week as she just hasn't been herself, she enjoyed build a bear and I was glad to get it done as we had promised her a visit there when we got back to UK and she had lots of money from family to spend, and spend she did! I had been made aware of the side effects of the drugs and I had tried to prepare myself but maybe not as well as I'd thought. I find the pain from one of her drugs hard to deal with as it seems to be constant and she has it in her jaw unlike most of the children who whowe'd spoken to had got it in their legs - Just to be different I think. She has also vomited nearly every day but it does seem to have subsided a bit. It was a shame we missed the race for life but I knew that chances were that we wouldn't make it although we'd been so optimistic on Thursday!

I did have a lovely birthday drinking pimms in the garden with my family. What would I do without my Mum and Dad?