This is how it all started; it has been a year today

I almost feel as if my calendar has been adjusted. New Years’ was a fly by affair, but today is weighty. I do remember so very well arriving at Kings A&E because Vega’s foot was sore and not actually leaving again until… well, we haven’t left really.

We have no pictures of our two weeks at the Marsden, right after diagnosis. I think we were in too much shock to think about taking pictures. I feel somewhat sad and at the same time relieved that we don’t have any.

This is a picture of Vega right after we returned home from the Marsden.

She pretty much spent the first five weeks after diagnosis like this, crying on the sofa. Within days, our bright three-year-old had turned into this.

You can see she is poorly, her eyes still swollen from all the IV fluids she had in hospital, her hair limp, her colour off.

The pill crusher was on the table with every meal

Vega refused to take liquid medication in the beginning so we crushed all her tablets and she took them with yoghurt, still very reluctantly though.

Vega tried to play

But the tiredness was unreal, all consuming. Here she is lying on her marble run before she even had a chance to build it.

Haircut day

Vega’s hair was just coming out, bit by bit.

We had loose hairs everywhere – in our food, the sinks, washing machine, in the beds. It became unmanageable. Vega decided to cut it off and keep the remainder of her hair in her tin.

After the hair was off, there was a lot of pirate playing in the house!

I could make this blog post a tribute to sisters. Lyra and Alys are such an important, irreplaceable part of Vega’s life. I found hundreds of pictures of the girls together, keeping each other company, keeping each other safe and loving each other.

Vega was never alone, always able to reach out to them and they were able to reach out to her.

Yep, this is Vega, not Shrek as you might dare think

The steroid weight gain was incredible. She went from 14 kilos to 20 kilos in six weeks. She was wearing Lyra’s clothes as none of hers fitted anymore.

This self-portrait by Ray says it all; Mama is missing

Whenever Vega was in hospital, I went with her and Ray looked after Lyra and Alys.

Alys was small, still breastfeeding, and Ray had to spent many hours comforting a baby that didn’t have a clue why I suddenly disappeared again.

Another sister shot

We always, from the very start, made a point of including all the children, all of the time.

Lyra and Alys were always visiting Vega in hospital, providing much needed distraction but also, very importantly for Lyra, demystifying the hospital and how well or not well Vega actually was. But nevertheless, the hospital can be a lonely, boring place.

This is Vega on day 13 in isolation

She’s pretending ‘to feed the animals in the forest’ (and no, there is no forest behind that door, just a bog).

The tree house at Kings. Family time.

During Escalating Capizzi, mouthcare became a daily pain in the… mouth

Vega’s mucositis became so bad she was hospitalised and because she did not eat or drink for almost a week was eventually fitted with an NG tube.

This was one of our worst hospital stays.

Once again, Mama and Vega were missing

Staying in touch via FaceTime and sending good night kisses to each other.

We spent father’s day at the beach

Lyra gave Vega ‘a burial’. Both Lyra and Vega often say things like: “I am going to keep this toy/picture/stick until I die”.

They think that means a very long time.

Goofing about with wiggly

Amazing spirit.

This year has been all about blood; so much blood

Some days I felt I was totally seeing red. Literally.

18 transfusions to date.

This was Vega’s breakfast

And sometimes still is, though not so often any more. Antibiotics, steroids, anti-sickness and painkillers.

And then cereal (you should see what she has for dinner).

This photograph became runner up in a photo competition

It features in  Children with Cancer UK’s calendar for 2013. Of course, sisters again. And who would have ever thought that we would feature in a calendar for a children’s cancer charity a year ago.

It reminds me that life as you know it can change in the blink of an eye.

All this time I have looked at Vega and always thought she was carrying this burden so well

She never looked as poorly as some of the other kids we saw at Kings or the Marsden. Then I found this picture. To me, here she really looks like a child that has cancer. Completely hairless. That cancer/chemo look.

First day at school

What a milestone and she knew it too.

Look how happy she is!

This picture reminded me how much I carried her

I carried her around for most of the first part of the year, steroid fat and all. My back is ruined. She still tires easily and often asks to be picked up and carried up stairs etc but it is getting better. I am also looking at Alys again. The ‘baby’ in the buggy, Vega on my back.

Hair is coming back and making such a difference to appearance

Now people actually ask me why I trimmed her hair so short, if they don’t know us, or haven’t seen Vega all bald.

Beads have a new place

The string of 862 Beads of Courage is over eight metres long (about a metre per 100 beads) and it couldn’t hang next to our kitchen door any longer.

So here it is, the Art of Survival. With two self portraits below, Vega and Lyra.

Many things I have no pictures of but in my mind. And on we go for another year, collecting more pictures, beads and memories.