Hope….

The hardest words to write are those that are buried deep, deep down within a heavy heart.

We are all fine for now. Daya has been in the hospital for some time. But our friends, who have buried or cremated their children, are not. I don’t say those that have ‘lost’ their children. ‘Lost’ might mean someone wasn’t paying attention. No. They have paid such close attention to the point where they have exhausted themselves time and time again. They aren’t lost. They are gone forever. It pains me deeply that this is part of our reality. I want to go back to that life where we were blissfully unaware of such things.

But today families are without their children. Cancer got them. I know far too many. It actually makes me feel physically sick to think about how many lives have been cut short. And these losses aren’t sudden. They are preceded by countless months or years of awful treatment. This Christmas they won’t be here. No presents to buy, one less person excited on Christmas morning, one more empty chair. They won’t be in the carseat when you look back to check the mirrors in the head rests. No one will be singing along or smiling back…

Many people think that our lives must be great now or better after surgery.

Surgery was well researched by us and our medical team. Instead of stepping back and treating us like loonies, which they could have done, our team stepped up and stepped into our discussions. For that we will always be thankful. Surgery was also exceptionally high risk, there was no margin for error and it was successful. It was an unbelievable outcome for many.

There are two conversations that stand out in my mind.

When I first met the surgeon;

He asked me if I had any questions? Any at all?

Daddy: None that we can think of. I think you answered most of them in our call and today.

He nodded, looked at me and daddy and then back at me and said any questions? You can ask me questions at any time.

I looked straight back at him and said ‘nope. I have no questions. All I know…. is that I needed to…get.her.here….to you. I needed to bring her here and I needed it to be you. Beyond that is out of our control’.

He looked back at me. Looked at his computer. Nodded. Stilled himself and said ‘oh fuck’.

Only kidding! He didn’t really, he said ‘and when your daughter is in there, she is my daughter too’.

We also exchanged words immediately before the operation.

I’ll never forget it when he came out and told us that he had gotten everything out. And I’ll never forget watching her through the immediate recovery period.

So surgery was a part of our journey. It’s a phenomenal part and I’m thankful and relieved both at the same time. But it was never the end of our journey.

Our treatment journey continues a bit longer. And hopefully Daya’s life will go on forever.

The sad thing is that, with neuroblastoma, surgery doesn’t guarantee that you will survive. Sometimes nothing can beat cancer.

You can do everything and still not make it.

Months ago, I sat with a child on the floor in our bay. He hadn’t been eating. I fed him some of our fruit. His dad watched us as he rested in his seat. Daya was asleep in the cot. I spoke. He nodded. He edged nearer and leaned on me. I gave him a cuddle and I kissed his bald head. I asked him if he wanted some more grapes. He said yes. His dad smiled. I sat there peeling grapes and orange segments and he ate them. We didn’t talk. His cancer affects the brain as well. So he stays fairly quiet. He died very recently. It doesn’t hurt any less that it’s not my child. And nothing is guaranteed.

These children they come into our lives. They fill us with hope and then we watch them suffer. When they are gone it makes no sense. The little shoes in the hallway, the empty car seat, the story books beside the bed….

A nurse and a friend told me a story of how a child with neuroblastoma died on her shift. She paused at the end.

I said: why did you tell me that?

She said, after a long pause, ‘that child died quickly. He’s gone. You still have hope. HOPE. Pam you have hope. And our little day-day is still here. You have that.’

Hope. Definition: a feeling of expectation and desire for a particular thing to happen.