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!

So this is what normal feels like? -Week 57 to 60

I have finally managed a whole month (4 weeks) following something the doctors call protocol! I am supposed to have my injection (vincristine) and my minty medicine ( steroid) for 5 days on week 1. If my bloods are good I get a week off of blood tests and hospital on week 2. Week 3 is blood tests and then week 4 is a week off before we star again. I am having my goblins (IVIG) on weeks 1 and 3 to help me fight the Parvovirus.

I have medicine every day, one is an antibiotic and the other one is Brown and called chemotherapy. I have another green chemotherapy which I have to take every Saturday. Depending on my blood results I either take 100% of the dose 50% or none at all. I seem to take none at all more often than not. This month I've been on 100% my bloods have been good and I haven't even needed a blood transfusion!

I've been to school most days, except hospital days and steroid days. I get tired on those days and sometimes I get sore ears and gums or sore legs (the vincristine causes Jaw pain and leg pain) I have started making lots of friends in school and I was there for World Book Day. I went as the very hungry caterpillar, when he was a butterfly, I didn't want to wear a dress because I would have to wear yucky tights. They already make me wear them everyday with my uniform.

I have managed to go and play in the park and go to town, have my cousins over to play or been to play at their houses and just do normal family things with Mummy, Daddy and Joe.


But I think the very most exciting thing I have done this month is have a sleepover with my cousin. My brother had his birthday and his friends came to sleep at our house, he was 12 and I don't think he really wanted me there in case I tried to play with his friends. So instead I got to go and sleep somewhere else without Mummy or Daddy! I took own Peppa Pig bed and pyjamas and my Auntie collected me when my cousin finished school. It was very exciting and I got the giggles so it was hard to get to sleep. In the morning I got up and played and played and played!

Mum says: We have finally had a good month, uneventful! Alice has had her moments, the steroid makes her a little difficult to live with. The sleep disruption is the hardest part as it is upsetting for her and me! We seem to mostly be on top of it, giving her steroid earlier in the afternoon, the tantrums or the grumps as Alice calls them are difficult to manage but I'm glad when she lashes out that she is only small. I don't envy those dealing with teenagers on steroids. The thinning of Alice's hair seems to have slowed down now so fingers crossed it will start thickening up again. And normal? Well it feels fragile but fantastic! 

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!