Diagnosis…Prognosis…what next?

Diagnosis is done. We are waiting for the results of many tests to give us an indication as to where to go from here.

I remember the very first night the doctors saying that Melanie was near the edge. She was so weak when she was hospitalised and there was a good chance that she could not make through the theatre session where they gave her total anaesthesia.

She might have been “near the edge” then but she came back to me and everything was going to be just fine.

My husband, Andi tells me all possible scenarios but I don’t want to listen to him. Just focus on the good outcome.

They say 80% survival chance. But actually, for AML in children it is so much lower. I understood “survival” being absolute cure. Perhaps I only wanted to understand it this way. I don’t know.

One month later… the test results shows that Melanie is in remission. This is unbelievable. Just after the first treatment of four treatment protocol.

Melanie goes from the worst-case patient into a very good-case patient scenario. This is something to celebrate. Once again I know that she is going to be just fine.

WHY?

Why in my brain?
It caused me so much pain.
Why in my head?
Perhaps somewhere else instead.
Why in my brain?
We tried a fluid drain.

I just want to walk like you.
I’ve had enough now, haven’t you too?

Poem from Sophie Pollock who lost her battle with cancer in 2007.

Things you can do on Difficult Days

Talk about the child who has died.
Write a letter to him/her.
Eat his/her favourite food.
Watch a video of him/her.
Wear one of his/her clothes like a scarf.
Light a candle.
Look at photos.
Listen to his/her favourite music.
Visit the grave.
Cry, laugh, scream.
Release a balloon with a message.

Some tips for parents and siblings.

What’s the Point?

What’s the point of eyes,
If you’re not here to see?
What’s the point of ears,
If you cannot hear me?
Every sense on my body,
Useless as a broken toy,
What’s the point of beauty,
If you cannot enjoy?

Cry of a parent - by JK.