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!

Birthdays and Blood Transfusions - Maintenance - Week 46

1st to 7th December

I've had a very exciting time celebrating my Birthday. On Sunday we had a Mad Hatters Tea Party at my house with my cousins and some friends. It was lots of fun. I had a teapot birthday cake, I wore my Alice in Wonderland dress and we played pass the parcel, but mostly we made lots of noise and mess, we even hid under my sisters bed if you take the draws out from under her bed 4 of us fit under the bed!

Monday was my actual Birthday and I went to school which is always fun and Mummy took me to McDonalds for lunch, just us 2. When Daddy came home from work we put Skype on to talk to Nana and Grandad in England and I opened MORE presents from Mummy and Daddy and my family in England. It is so much fun being 4!

On Wednesday I went to hospital to have my blood tests, we were hoping to make it to my dance class in the afternoon, although I had been tired for a few days it was hard to tell if it was because I was excited or ill. When I got to Rainbow Ward they made me wear a special Birthday Hat and gave me a present, a game and they sang to me and I had balloons. I wore my new special silver shoes I had for my Birthday for the nurses to see.

My blood tests weren't very good and I needed to have another blood transfusion. So the Nurses called Mummy for me to go and see them on Friday.

Mummy and I sorted out all my birthday presents and I took all the ones I wanted to play with whilst I had my blood. It takes a LONG time.

The problem this time was that I had a temperature when I finished having my blood and the Doctor said I was going to have to stay with them for a few days on IV Antibiotics. I was not happy about that at all, but Mummy and Daddy both had sleep overs with me so that made it better and I had my new toys to play with, and I got to put the star on top of the Christmas tree in the play room.

Mum Says: Alice had a wonderful Birthday and was thrilled with every gift she had. We try not to arrange a big party for her as we are always a bit unsure if she will be well enough to do things on the day, this year she was well and enjoyed every last second of her party collapsing into bed when everyone left. We knew there was a chance Alice would need antibiotics as she was getting low after her Birthday and we knew she had a cold, what child doesn't in December, there are lots of viruses around at school. We didn't expect her to need a blood transfusion. During Maintenance we are not suppose to be having transfusions etc. The Doctors have tested her again for the Parvovirus.

11th to 23rd September - MAINTENANCE - Weeks 34 & 35

11th to 23rd September

Being back at home is very very fun. I can play with my toys when ever I want and I have found toys that I had forgotten about.

I phoned my Nana and Alfred to come and play with me, everyone else is in school. They have taken me out in Alfred's car and to the park and Daddy comes home from work every day and we eat our dinner together and Joe is here and plays with me. I'm so excited all the time.

Friday I got to go to a birthday party as my Cousin turns 7 and I got to wear my Lala Loopsey dressing up! I loved it, the party, dressing up and playing with the children.

Saturday we went to a BBQ as Daddy's friend is leaving, I had so much fun with the children and played and ran around a lot! I especially liked the BBQ because they have 2 puppies, Millie and Jemma and I loved them. I think I might be a puppy. They like chicken, so do I, They like rolling around on the floor, so do I. They get very excited seeing lots of new people, so do I and they get worn out and need to sleep a lot, so do I.

Monday was a very special day for me as I started my nursery at school. I met my teacher and visited the class on Friday but on Monday I got to wear my new school uniform. I was so much fun and I really enjoyed playing with children and I got a sticker on my second day for being good. I told Mummy that at school we do lining up but we do other stuff too. I am especially lucky as my cousin goes to my school and when Mummy left me in the playground my cousin came a looked after me for a little while until she had to go to her class.

I had my first trip to Rainbow Ward on Wednesday so I missed school and had a blood test. I didn't mind especially as the Doctor told Mummy that my blood wasn't very good and that I could stop taking my yucky brown medicine and green Saturday medicine.

By the end of my week of firsts I also get my first temperature and went back to Rainbow Ward ... lucky I like it there!

Mum says: It was great to see Alice star nursery and enjoy it so much! We have been very busy and She had been coping very well. If not a bit more tired than usual. Gareth and I managed  a meal out before Alice's temperature went up too much by Saturday morning we had to go to the hospital to be checked. It didn't seem initially like it was much of anything and she wasn't neuropenic so we came home with antibiotics. But by Sunday We became aware that things just weren't improving so went back to the ward!  

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.

15th to 23rd February - INDUCTION - Week 5

15th to 23rd February

On Friday Daddy came to visit it was very exciting for me to see him. He came very late in the evening and I had to go to bed because I was too tired to stay awake. I did try very hard

We didn't do very much on our first day together because we were just enjoying being together. Daddy and Mummy took me for a walk but I was tired so we didn't go far.

On Sunday we went to my Aunties house and had lunch. We were having problems with my NG tube and when Mummy manged to get it working I'd drunk so much milk that my stomach was Alkaline not Acid. The nurse did laugh when Mummy told her!

I ws feeling much happier having Daddy with me and I really liked playing with Aunties cat, well trying to at least.

On Monday my Key worker came to Nana's house to see all the grown ups and to talk to them about me and my treatment and when I might be able to go home. The community nurse also came to speak to them about what they do and when we can call them.

By Monday night I'd sarted getting a temperature and I was taken to the hospital in Leeds in Grandads car.

I was told that I would have to stay in for 5 days and have antibiotics. I also had to have a blood transfusion whilst I was there. I didn't get to stay on the ward with the other children with cancer as there was no room, Everyone had decided to visit them! 

The nurses on the ward I was staying on were really nice to me and Daddy came to visit everyday. The Physiotherapist came to see me and to make sure that I can keep active and to help me build my muscles again so I can play and when I go to Gibraltar I can start going to my dance classes!

The Doctors decided to give me a week off from my chemotherapy and it has made me feel so much better. I am much happier and I'm doing lots of walking around the house and playing like the physiotherapist told me. Mummy has made me a sticker chart so that we can see how many times I can walk up the stairs. 

Daddy had to go home on Friday and Aunty came to collect me from the hospital on Saturday. I'm getting used to speaking to my family on skype now and as I feel better now I can play with them!

 Mum Says: I don't know how I could have got this far without my family and my parents particularly their patients has been saintly with both me and Alice! We have invaded their house and taken over their lives which I suspect they thought as we (their childern) were all settled now and unlikley to move back home.
It was however such a releif to have Gareth here and to be able to share Alice with him. It is very tiring to be with her when she is so obviously unhappy.  Again it came as a supprise to me how badly I needed to see him. I did know however that Alice was desperatly missing him and home. We have seen her mood lighten as the steroid dose had been reducing which is heartening. She was knocked for 6 by a cold! and we have spent 5 days in hospital for something I wouldn't even go to the Doctors with normally. What ever the reason for the break it has done her the world of good, she is happier and more active than I've seen her in a long time, since arriving in England maybe. her appitie it still a little strange but I'm now trying to get it under cotroll a bit more and hope that this week we will be able to move ahead with her treatment. Any delay is obviously heart breaking for us as we are now uncertain when we will get home. We are still facing an uncertain future as there are complications with her treatment due to the Parvovirus and gernrally any delays there maybe in the furture but at least she is now feeling a little more like herself and is starting to make jokes and play! It is heart breaking to see her shuffle around like an old lady, to not be able to stand up if she is on the floor and to watch her crawl to use furniture to pull herself up. She has mastered getting up the stairs but can't carry a dolly up with her and hasn't managed to get down stairs yet. She has however this week started planning her life when she gets home and is talking more about everything and everyone and has had me beaming all day!  We are now just going to have to take everyday as it comes and I have stopped looking at the calendar to see if I'll be home for X,Y or Z and will just ahve to keep faith that I will get home soon with Alice.

Off to England we go

7th to 15th January

In January the Doctors decided that needed to go to England for some tests. They wanted to know why my blood was still ill.

I was quite excited about going on the aeroplane and seeing my family in England. especially as I hadn't been going to nursery for 9 weeks and had missed lots of Birthday parties.

When I got to England Mummy and Daddy had booked a flat for us to stay in which was exciting, I was exploring the flat making lots of noise and waiting for Nana to arrive. I had seen snow for the first time at the airport, although I wasn't keen on it, and was pleased to be putting on my new pyjamas that my Aunty and Uncle had given me.

When I was going to bed I had a temperature and Mummy called the hospital, Great Ormond Street. They told her to take me straight the the local Accident and Emergency at UCLH. I missed my first test at GOSH as I was having antibiotics and a blood transfusion on Tuesday morning. Mummy stayed with me and Nana and Daddy visited. My Uncle even came to see me! I had been painting whilst I waited to see what was happening with me and if GOSH had a bed. I gave the best painting, a dragon, to Uncle for my little cousin.

When it was time a man came with a wheel chair to take me in a special little ambulance to GOSH. it was very exciting to go in an ambulance and I made the nice man take me all the way to the ward in the wheel chair even though I could walk! 

At Great Ormond Street there was another visitor my Grandad!

Mum Says: We knew there was a risk to flying with Alice when she was suffering with Neutropenia but didn't expect to be in hospital as soon as we arrived in England. We arrived with mixed emotions knowing that we were going to get an answer but also being aware we might be told something we didn't really want to hear.