The nurses are giving me blood.
Mm-hm.
It's the blood bags.
Give you energy.
SHE GIGGLES
Heidi has a condition called Diamond Blackfan Anaemia -
or DBA for short.
Can you play?
It's a condition that causes bone marrow failure.
And, basically, Heidi...
And therefore she needs to have blood transfusions once a month
to give her new blood cells to carry on having a normal life,
like everybody else.
He's like a brave bear that roars.
Do you want me to get dressed up as a mouse?
You know, after all we've been through,
it kind of put our life on hold.
There we go.
Right, get ready to bounce.
Oh, hang on. It takes a little while to work.
When we put it in, we'll have to count to ten.
Steroids are a nasty drug, and it's really horrible putting a lot of
that medicine into your child's body.
It's very significant to us, to Heidi,
which way the steroid trial goes.
These beads are called beads of courage.
I get them when I'm very brave.
This is a bone marrow biopsy.
Do you know why it's called bone?
Cos they take some of my bone out.
I did a bone marrow test
to see if I could give some bone marrow to Heidi.
But it didn't work cos me and Heidi's bone marrow didn't match.
There are some downsides to being on steroids.
It can change mood and it can make Heidi feel quite cross at times.
It's not funny! I'm looking at your tummy. Heidi!
She's lying down in the hospital bed and Mummy is touching her feet.
OK. Yes. Thank you very much for your time, Amanda.
Thank you. See you soon. Bye-bye.
It's failed.
It's quite difficult...
..to...
..to deal with.
Sorry.
The steroid trial wasn't working.
And she was crying.
So I came over and gave her a hug.
I get a blood transfusion.
Are you hiding all your veins?
Have they all disappeared now? Ow!
Good girl. Good girl.
Ow! We're in, Heidi! You've done it.
Why are the nurses giving you blood, lovely?
Because I've run out.
And what happens when you run out of blood?
I stop running.
Mm-hm. And then what happens when you get your new blood?
I run.
SHE GASPS You do, don't you?
To me, when Heidi has a blood transfusion,
it's like some amazing stranger has come along,
and is going to hold her hands for the next four weeks.
We don't want to look back ever and think,
"Well, maybe there was something we could have done that could've
"made life easy for her, and we didn't do it,"
so we've done it and we've given it our best.
Although I would take the blood side away from it,
I wouldn't change anything else about Heidi.