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I like: listening to music while I have my chemotherapy
I don’t like: feeling sick
My favourite food is: Watermelon sweetzies
My favourite colour is: teal
I am good at: being brave
I am not good at: Pixie Roller Tag
One thing I find challenging is: missing my family while I am in the Twisty Woo Hospital
I like: sharks
I don’t like: having needles
My favourite food is: berry pine ice cream
My favourite colour is: royal blue
I am good at: times tables and maths
I am not good at: cleaning my room in my toadstool house
One thing I find challenging is: sitting still while I have my blood transfusions
BARTY: Hello. I’m Barty the Blood Disorder Pixie…
MOONDROP: Hey, Barty? What are you doing?
BARTY: …and this is my stepbrother, Moondrop. I’m recording a blog for Queen Pearl.
MOONDROP: Oh, sorry.
BARTY: Would you like to join?
MOONDROP: Sure! How about we ask each other questions?
BARTY: Okay!
MOONDROP: Okay! Here is one of my questions! Umm… Is your Haemophilia ever going to go away?
BARTY: Maybe one day, when I’m a lot older and if the scientists can figure out a cure. My haematologist said for now though, it’s a lifelong thing, but if I have my haemophilia medication, I can control it better. What about you?
MOONDROP: Well, I don’t exactly know. My paediatric oncologist is doing her best to get my cancer into remission. That means that I’ll be free of cancer for a while and hopefully forever.
BARTY: Oh. That would be sprizzletastic!
MOONDROP: Yeah. It would be. Hey! I have a good question! Why do you have to go to hospital sometimes?
BARTY: Well, with my medical condition, my blood doesn’t have the right amount of clotting factor that makes you stop bleeding. Sometimes, if I have had a bad bleed, I have to get haemophilia factor medication through a needle into my veins and I don’t really like needles.
MOONDROP: Yeah. I don’t like needles either. I have to have them for my chemotherapy and oh, they make me feel so sick.
BARTY: What strategies do you use when you’re getting your needles?
MOONDROP: Well, I love snuggling my toys when I’m getting my needles. It helps me to relax. And I have my really cool Super Soft Sensorian. He’s my pet, and he hangs onto my wrist and I just stroke him and twirl him around my fingers. He helps me to forget about the needles for a while.
BARTY: Yes. I love cuddling my toys and my Bravery Buddy and watching tv when I have my factor medication.
MOONDROP: So, one last question, what do I do if you bleed?
BARTY: Well, if I bleed, you need to stay with me and get someone to go get an adult you trust, such as a parent or teacher. If they can’t stop the bleeding they will take me to the hospital. It’s important that you listen to me if I say I’m bleeding as I know when I am, even though you may not be able to see it. I might be bleeding inside my body. It’s not always outside. And you don’t need to be scared as our parents and teachers will know what to do to help me.
MOONDROP: Oh. Is that why sometimes your elbows and knees can get swollen?
BARTY: Yeah.
MOONDROP: That sounds like it could be serious.
BARTY: It can be sometimes. But our parents know what to do though and the haemophilia medication works really well too.
SIOBHAN: Barty? Moondrop? Would you like to read Zizzy’s book?
B and MOONDROP: Sure!
BARTY: Thanks for listening to our blog! We are going to go read our friend, Zizzy’s book now. If you would like to send us an email, get your parent or guardian’s permission and send it to [email protected]! Have a great day! Bye!
