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.

23rd September to 6th October - MAINTENANCE - Weeks 36 & 37

23rd September to 6th October

I have been feeling quite ill and have been in hospital for 7 days having IV antibiotics.

On Monday when the Dr came and listened to my chest he said he could hear a little rattle so I had to go for a chest x-ray.

The x-ray showed something not very good and the Doctors in Leeds want me treated for a type of pneumonia called PCP for short. I have to take antibiotics every Monday and Tuesday to try and stop me from getting it. It is caused by something everybody has in their bodies but when you have chemotherapy it makes it hard to fight and makes you sick.

I didn't have any oxygen but did get to stay in the room we call the goldfish bowl because the nurses can look in a big window and see me all the time!

I have been quite happy on Rainbow Ward and I have got out of bed and played everyday! I am having some pink horrible steroid and I think Mummy would rather that I didn't get grumpy then excited then hungry then grumpy quite so often but I can't help it.

I love all the nurses who look after me on Rainbow Ward and make my time so much fun! Everyone knows me and Mummy here and everyone wants to come and play in my room because it is the best place in the hospital to be!

My Nana comes to see me everyday so Mummy can go home or to the shops or what ever in the mornings and Daddy comes for lunch with Mummy and me and then he looks after me when he finishes work so that Mummy can go home and look after Joe and cook dinner for them.

I got to go home on Monday when I was well enough but couldn't go to school so Mummy and I made cakes and played and my cousins came to visit and play with me.

The good thing about being sick is that they didn't give me my monthly injection in my wigglies yet so I haven't been as tired as I normally am at the beginning of the month.

On Friday I was feeling much better and wanted to start going back to school but I had to go to the hospital instead to have blood taken from my  wigglie and also from my hand because when they took blood on Sunday the people in the lab grew something and they think I might have an infection in my line.

I have to have IV antibiotics again but because I am so well the Dr lets me go home during the day and I have my medicines at night when I sleep at the hospital. We are waiting to see if anything grows in the blood they have taken.

On Saturday instead of going home from the hospital Mummy, Daddy and I went to town and did the walk for life to raise money and awareness for cancer research.  It was fun and we saw Mummy's friend and they walked together talking all the way! Joe decided he'd rather play basketball then come with us. Next year we are going to make Daddy and hopefully I will be well enough to walk some of it.

Saturday night was also very exciting because Daddy had a sleepover at the hospital with me and Mummy went home instead.

Mum Says: It is very hard to be back in hospital again after such a decent stretch out in the real world. It reminds us all that Alice is still sick and not as well as we would like her to be. 

Being in hospital in Gibraltar is a lot different than being in the UK. I get to go home everyday and spend some time with Joe and to do the washing and generally keep an eye on how the boys are coping at home. We see Gareth everyday before he goes to work, at lunch time and after work! Although Alice has been quite ill she has been happy and alert and playful. Which is a different experience from the last few months when she hasn't really been happy or playful at home. 

The Nurses on Rainbow Ward make you feel like part of the family and keep Alice's spirits up. The little things count like putting a picture up with her name by the bed. It all adds to making the late night dash to the hospital a little less stressful.

Gareth and I tried to celebrate our 15th wedding anniversary on the 3rd and it started well but I got a call from the hospital asking me to bring Alice in for blood tests as her blood culture taken on Sunday had grown a bacteria and they were concerned that her line might be infected. So Alice had to start on IV antibiotics and have new cultures taken from the line and from another vein. So the stress and waiting began again!

This time the Dr saw how well Alice is in herself and she is able to come home during the day, having most of the antibiotics at night when she is in the hospital advantage of being 10 minutes away, thank goodness Gibraltar is so small!

We are now starting to try and break Alice of the Mummy habit that she has developed over the last year Gareth stayed with her at the hospital and I got the bed to myself and an unbroken night of sleep!

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!  

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!