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!

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.

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!

 

25th February to 2nd March - CONSOLIDATION - Week 6

25th February to 2nd March

This week has been really good. My big sister Toni came to visit. I stayed up late and went to collect her from the train station. I was very happy and excited to see her!

Since coming out of hospital I have been feeling much better and happier. I have been doing lots of walking, playing and climbing stairs so that I've got lots of stickers on my chart this week!

On Tuesday Mummy and Nana took Toni shopping in town and I stayed with Grandad. I made a butterfly picture and spilt glitter all over the table and floor. Grandad tried to clean it up quickly but Nana and Mummy got home before he could finish and caught us with glitter everywhere!

I had to go to hospital on Wednesday which I didn't like because I was going to have magic milk (anaesthetic) and my immunoglobulins . I was very hungry and grumpy. My big sister came with me and Mummy. There was a nice lady at the hospital who did face painting for all the children waiting to see the doctors. It got very late before I got to go for my sleep because a lady called a dietician came to see my Mummy and I had to see the Doctor and have lots of blood tests taken

 

When I did go to sleep they gave me some medicine with a lumbar puncture as well as taking some bone marrow and something called a trephine. The Doctors want to find out what has been making  blood so poorly, the Parvovirus or the leukaemia. Except this week my blood was very well! I wasn't neutropenic or anaemic!!!! I did have to start a new type of chemotherapy which I take every night in my mouth, like normal medicine.

Everyone got a bit worried as I had a high temperature after my immunoglobulin (IVIG) and we thought that I might have to stay in hospital again.  When the Doctor came to see me I was fine and it was just a reaction to the IVIG and quite normal, although they took more blood to test just in case!

On Thursday we decided to celebrate that I could go out and mix by going into the village and eat our lunch at a cafe which was  very exciting for me! In the afternoon my little cousin came to play. We had lots of fun and lots of giggles and made a BIG mess in Nana's house!

I was very tired after such a busy day but I have been busy growing since coming to England and Mummy had to take me to town on Friday morning to buy new shoes. My old brown ones were too small and I need shoes at help me to walk properly. Toni came to help me choose new shoes. I wanted red ones like Peppa Pig. The lady in the shop was very nice and helpful but they didn't have red shoes so I chose nice purple boots with flowers. I think they are better than red shoes. Because I was tired I spent the rest of my day at home cuddly watching films with my Mummy

Mum Says: This week it has been much easier to be positive about Alice's treatment as she has been so well in herself and so much more like our little Alice. I have enjoyed having Toni here and getting to sit and chat about her life over coffee in town like normal has been wonderful. I still feel a bit giddy when I think about her blood test results, the best she has had in the last 3 months! I am now hoping to be allowed back to Gibraltar for a short time at least. I am mostly just enjoying seeing her so well this week and I am getting as much squeezed into our week as possible whilst we can go out and about!