I get grumpy too! - Maintenance - WEEK 69 - 72

14th May to 10th June

We have had another month without a hospital stay, although this month I have been neutropenic and a little bit anemic, I've had extra blood tests this month but I don't mind going to see my friends on Rainbow Ward, especially as blood tests don't take very long.

I am starting to have a few problems with my walking and when I go dancing I can't skip or jump anymore, not like I used to. But I don't mind because I am going to have a sparkling costume and dance on stage like my cousin. Well not quite like her because she has been all the way to Croatia with my dance teacher for a competition! But I am still excited. I can only do the show for one night because I am going to be in England seeing my Doctor and family the same week as the show.

I have also been having trouble keeping my grumps in this month. It might be because I am very tired because I am so busy. I have been trying my hardest to be good but I did draw Mummy some friends on the wall in the hall. I have asked my imaginary friend Matthew to live on the balcony because he is a bit naughty and encourages me when I feel a bit mischievous.

Both Mummy and Daddy have had their birthdays which has meant I got to make them presents and eat cake we even took Daddy out for lunch on that day we went to see a big boat called HMS Defender and I got to try on army hats and touch guns and run around. I even sat on a helicopter.

I have  been to a special Birthday Party for my friends the triplets. They were born a whole year ago when I was very sick in hospital and now we are all at home and causing trouble!

The very most exciting thing to happen this month is that my big sister is home from University!





Mum Says: Life is starting to return to normal or maybe we are used to our new version of normal. Alice has been well. We can see the effects that treatment is having physically and emotionally on Alice but hope with a positive attitude and support we can get her through this and get her back on track, if not now, over the next few months. Alice has shown such strength of spirit and determination over the last few weeks, wanting to be 'normal' dragging herself off the sofa to go dancing. Getting up and out everyday for school! She makes it impossible to be anything but positive about her future. We are also getting more relaxed about crowds and being around people with Alice having managed the beach, park and a couple of birthday parties we finally felt able to risk crowds of tourists as well as locals on HMS Defender! And to top it all off Toni is home and we will have her until September! Finally some proper family time.

My Birthday Present painted by Alice

Life is Good - Maintenance - Weeks 65 to 68

16th April to 7th May

I've made it through another month without having to stay in hospital and I don't have to have my IVIG any more, I am now clear of the Parvovirus again and I am feeling so much better.

It has been the school holidays and I've had the Grumps! I have tried to do my best at being good and keeping active and I think I did better than some other months, defiantly better than at New Year.

I have kept busy and been to the beach for a picnic, I've had my cousin over to sleep and I've been swimming in the sea at the beach another time with My Brother and his friend. I've even had the paddling pool out on hot days. The Doctor has given me special Sun cream so I can enjoy playing outside.

I have seen a new physiotherapist lady who made me do exercises and has also made me see a man who drew around my feet and looked at me walking.

I went on the trampoline at my cousins house on Uncles birthday and hurt my leg, I've not been allowed on the trampoline since I came back from England in September, now I know why.

We've had Easter eggs.

I went to Church with my whole family for my brothers Confirmation, we also had lunch together. Because I hurt my leg I couldn't walk all day when Joe was confirmed and Mummy put a bandage sock on my leg.

I've been to see my cousin dance in a show and I've been to the Governor's House with all the children from my dance school to get our certificates from the exams we did a LONG time ago! I really liked my Cousins dancing and I'm going to try EVEN harder to get to my classes no matter how tired I am.

I've been trying really hard to fill up my sticker charts so that I can have something special, Churros or noodles from a shop.

I did have to miss a couple of days from school after the holidays because some children were off with chicken pox. But as it doesn't seem to be in my class and so far no more children are off I've been able to go back in time for Pirate day!

I have worn myself out a lot of days and I've even had to sleep in the day because I've been so busy! But it has been so exciting and fun!

Mum Says: I suspect what we consider a busy month these days is the same as most of our normal months before Alice got sick. We just didn't appreciate it. Alice has worn herself out this month pushing herself to the extremes of her physical capabilities. As I assume most of the children on treatment do Alice walks like a little old lady when she is tired and this month that seems to be most of the time. She has been to see the Physiotherapist here and that has helped us to see where her problems are with walking and how to deal with them. I understand that most children who have treatment for ALL under the age of 5 end up with in soles and need some from a physiotherapist. Unfortunately she did hurt her ankle or knee or both, it is very hard to tell what she's done to herself as there was no swelling or bruising and Alice seemed to think she had to rest 3 days to get better (nobody knows where 3 days came from!?!), which is pretty much what she did and she got better! A Doctor in the making? Whilst Alice is on steroids we tend to try and avoid big social situations so we had a quiet Easter and places like the beach are ideal for her, no pressure to behave so I'm hoping we have found a coping strategy over the summer.

I found Joe's confirmation very emotional (don't know what I'll do if he gets married, I might have to stay at home for all the crying I'll do),  it gave me time to remember all the special times we've had with him and his 'rites of passage', Baptism and First Communion. It was an occasion where we missed having Toni home, still she'll be home soon and I have to find a small corner of the house to fit her in!

Long May This Continue! - Maintenance - Weeks 61 to 64

19th March to 9th April

Life has been good. I have been well and in school and have had my second month following protocol. We have even managed to go out and meet up with friends and I went to my first class birthday party! I've been on 100% of my medicines all the time and when I saw the Doctor for my Vincristine he told me that it was looking like I'm almost clear of the Parvovirus!

I missed school and caused the usual mayhem and destruction at home whilst on steroids. I find it very hard to sleep when I have them and get very tired and bad tempered, I have been trying very hard to control my grumps and keep them put away but when I have the steroids I'm not very good at managing it!

The most exciting thing though that happened this month was my trip to England and to the hospital in Leeds. It was exciting because I have been so well. 

When I actually went to the hospital it was a bit funny because my normal Doctor wasn't there and I don't get to see her very often now because I'm mostly in Gibraltar. But my Special Nurse, key worker, wasn't at the hospital either! Which did mean Mummy didn't talk and talk and talk! I did see a lady called a physiotherapist  because after my monthly injection of vincristine I walk on my tip toes and it was worrying Mummy a bit. When I go home I'm going to see another lady about it and I'm going to need something in my shoes to help me walk better!

I had my IVIG at the hospital and my big Cousin came to see me and it was a bit of a worry when I got a temperature. But it was all OK and I went home in my Uncles car not to bed in the hospital

When I was in England I went to Ducklings and played with my little cousin. We even went to her singing group funky monkey and got to wear funny monkey hats! I stayed with Nana and Grandad and I ate all their nice food and played with Nana's toys and art stuff. Mummy and my Auntie went into town for an afternoon without me and my cousin mostly because Joe has grown out of all his clothes for the summer! 

I like going to England and seeing my family especially when I feel well!

Mum Says: Apart from the concern about Alice's temperature on the day of her treatment in Leeds we have had another very normal month (well as normal as it can be) Alice is well and has done some serious growing over the last few weeks whilst she has been well. Unfortunately we've had a bad sleep month with the steroids and our trip to England, Alice gets very clingy and doesn't sleep well on her own when we are in England and it lasts a couple of weeks after we get back but still that is something for us to deal with over the next few weeks. In the mean time we are enjoying the ordinary-ness of going to school and looking forward to the school holidays!