Quotes

This has been an incredibly long journey for Seth and also for us. It’s not over yet but hopefully the worst is well behind us. We really could not have made it through this ordeal without the vast network of family, friends and colleagues who helped us along the way.

The list is too long and varied to thank everybody individually, and the names probably won’t mean anything to those who might read this blog in the future and are going through a similar situation. What will hopefully resonate are the acts of kindness and offers of help without which I have no idea how we would have made it through. So, to all of the below, from Seth and from us THANK YOU. (You know who you are).

We are so grateful and thankful to those who:

Looked after our children

Walked and fed the dog

Stayed overnight to help with early mornings

Ferried children to swimming lessons and other clubs

Visited Seth in hospital

Visited us in hospital

House sat

Created this blog site

Covered at work for us

Brought us many homemade meals

Understood and made allowances for what we as a family were going through

Texted/phoned and emailed support

Showed flexibility in arrangements and working hours

Bought Seth presents

Bought the other children presents

Offered their help even though we didn’t take you up on it (the offer is still appreciated)

Organised money making events

Prayed for us

       Were there for us all

Seth is doing amazingly. He’s put all of this behind him and is getting on with life, the way he should.

I heard the following words, they were written by Stephen King. I think this sums up our journey:

We did not ask for this room or this music; we were invited in. 
Therefore, because the dark surrounds us,
Let us turn our faces toward the light. 
Let us endure hardship to be grateful for plenty. 
We have been given pain to be astounded by joy. 
We have been given life to deny death. 
We did not ask for this room or this music. 
But because we are here, let us dance.

Portofelice Camping Village, Eraclea Mare, nr Venice, Italy (yes, we made it on holiday!!!)

Tuesday January 26^th 2016

Today Seth has the central line fitted. I rush home from work to come in and see him. I know he was late going in for the operation. I know that he has been a while. I know his was out later than expected. When I get to his room, a friend who was visiting Em meets me. She looks shaken. There is also a nurse. The nurse explains to me that there were complications due to Seth’s airway being compromised. I’m taken down to PICU (Paediatric Intensive Care Unit) where Em is. What happened has already been covered in a previous blog so I won’t repeat it.

Seth is a mess. I see hair, tubes, wires, bruises, machines, and lights. I take myself to a calm place. It’s too much to take in. Damned if that stupid Athlete song doesn’t enter my head and stay there for a week…

You got wires, going in’
You got wires, comin’ out of your skin
There’s dry blood on your wrist
Your dry blood on my fingertip
etc.

I have to be strong. I need to be strong.

February 2^nd 2016

He’s back in the room. Thank goodness the endless of hours sat watching a sedated (though rarely still) Seth are over. He’s been extubated and is no longer sedated. He has lost two front teeth. One was wobbly but the other wasn’t. Guess it wasn’t all that easy taking the tube out.

I call him ‘gap-y’, which replaced the very brief ‘Throat Pack’ – a name which has now been adopted by the toy elephant he was given in PICU.

February 4th 2016

Something is not right. Seth is no longer in the room. There is somebody here but it’s not Seth.

February 5th 2016

An MRI and EEG show that he has slow responding brain patterns. We don’t know if this is just temporary or more permanent.

February 6th 2016

There are moments when Seth is here. I’ve worked out that it’s related to the oral morphine he is taking for pain. (He had so much sedation to keep him under whilst intubated that there are withdrawal concerns and he is being weaned off it.) Within half an hour of taking it he is stoned. Helter Skelter – off his face. Fortunately a doctor sees him before and after.

February 9th 2016

Seth is finally back. We’re not sure exactly what caused the temporary brain damage but he’s back!

I haven’t been jokey or called Seth any names recently.

February 14th 2016

Yesterday afternoon for no apparent reason Seth’s hair started to fall out. Suddenly there was loads of it on his pillow. It’s the weirdest thing. There was nothing in the morning. It just started in the afternoon. It’s coming out in clumps. I talk to him about perhaps shaving his head – or at least trimming his hair. He is not keen. This morning it’s just falling into his face. After about the 3^rd mouthful of hair he asked me to do it.

It’s odd. Throughout all of this treatment, although I’ve known it’s cancer and although he has had two rounds of Chemo and in spite of all he problems he has had…taking the clippers to his hair is the one thing that really brings home to me that he really, really, really has cancer.

 

 

I name him ‘Bald-y’.