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!