Photographs

When you’re trying to ride your bike but you have a wobble..

I’ve come to the conclusion that I carry to some extent a degree of ‘survivors guilt’. My children are home. I’m content. However, I can’t love mine without thinking of friends who don’t have their kids with them. It makes me cry sometimes.

On a hot day like today, I am thinking of you; you, who will not be putting the paddling pools out for the kids to splash around or driving to the beach. I think of you who will not be watching your children licking ice lollies and dancing under the sprinkler in their pants.

I think of you hearing other children squeal with delight and mothers calling them in from the hot sun. I think of you attending bbqs and making superficial chitchat. I think of you, who hasn’t been invited because people don’t know what to say to you. I know how shit it is. I think about you. I am here for you now, today and tomorrow.

I know I’m lucky and I won’t complain. I am lucky because she is still here for me to take photographs of her.

Loving can hurt, loving can hurt sometimes
But it’s the only thing that I know
When it gets hard, you know it can get hard sometimes
It is the only thing makes us feel alive
We keep this love in a photograph
We made these memories for ourselves
Where our eyes are never closing
Hearts are never broken
And time’s forever frozen still
So you can keep me
Inside the pocket of your ripped jeans
Holding me closer ’til our eyes meet
You won’t ever be alone, wait for me to come home
Loving can heal, loving can mend your soul
And it’s the only thing that I know, know
I swear it will get easier
Remember that with every piece of you
Hm, and it’s the only thing we take with us when we die
Hm, we keep this love in this photograph
We made these memories for ourselves
Where our eyes are never closing
Hearts were never broken
And time’s forever frozen still
So you can keep me
Inside the pocket of your ripped jeans
Holding me closer ’til our eyes meet
You won’t ever be alone
And if you hurt me
That’s okay baby, only words bleed
Inside these pages you just hold me
And I won’t ever let you go
Wait for me to come home
Wait for me to come home
Wait for me to come home
Wait for me to come home
Oh, you can fit me
Inside the necklace you got when you were sixteen
Next to your heartbeat where I should be
Keep it deep within your soul
And if you hurt me
Well, that’s okay baby, only words bleed
Inside these pages you just hold me
And I won’t ever let you go
When I’m away, I will remember how you kissed me
Under the lamppost back on Sixth street
Hearing you whisper through the phone
“Wait for me to come home”

Photograph, Ed Sheehan

Woven

We love this man.

Me or Anu, on our Hospital ward: He’s my man. I love him.

Nurses: oh hahaha yes. We love him too.

Me or Anu: No I really, really love him. Deeply.

Nurses: so do we. He’s excellent. We love it when he’s on.

Me: (eating a biscuit) if Anu cheated on me with him and married him….I wouldn’t have a problem with it.

(Anu smiling and shaking his head whilst sipping on his coffee).

Nurse: hahahahaha stop making me laugh I have to do Daya’s IVs. I can’t keep still.Me: I’m serious. If you married him I’d be proud. I’d be standing up and clapping at the wedding. Now, he would be a step up. That would be better than you marrying Rihanna. Now that I’d be ok with. I would be ok and not have too much of a problem with, but him….I’d be proud of you.

Nurse: I can’t do my IVs now Pam. You’re making me laugh too much. But I know what you mean.

Me: what? That he would be a step up from me? He’s married you know. So very sorry Anu but it looks like you’re stuck with me.

Anu: I’m not stuck.

Me: Go then. Just go. Find some crazy woman out there in the world that is willing to sacrifice herself and her sanity; like I have….

Anu: Crazier than you? If you let me finish, I’m not stuck, I’m staying out of choice.

Me: oh now you don’t want to go and find Miss Crazy because it’s snowing outside…now it’s a choice not a sentence.

Me: I’m happy with my own crazy wife.

Nurse: oh god I’m crying now. You’re too funny. This is why we love you. You find humour in things. In all the difficulty you smile. I need to change my gloves and start again you made me laugh too much.

Me: I’m telling you. I love that man.

Anu: So do I.

There are doctors…. and then there are excellent doctors. And then there is the man we love. If we are the keepers of our children, he is most definitely their caretaker. As Quentin Blake is to Roald Dahl, he is woven into the fabric of the story of our lives. We love him. I love everything about him. And if there was ever a doctor you wanted to look after your child (plural in our case) it would be this man. He has looked after them from 24 hours after birth til now and always will.

He has no ego. He is not arrogant. He is focussed on providing excellent care. He is intelligent. His brain is sharp and his manner is kind. He doesn’t talk at you. He’s a listener. He turns up. He turns up unasked just to check in with us all. And we love that. He is soft and decisive. He is honest and accountable. He has enormous integrity. I love him.

Girls, he has looked after you as if you were his own.

Jasmine has probably missed over 25 appointments due to Daya’s inpatient stays. We have never left any of our children alone. They have always had round the clock care from us. Maybe she has missed double that amount as a result.

I’ll let the pictures speak for themselves. For the last five years that we have been in hospital over Christmas, he’s been there too. Last Christmas I took Jasmine in to see Daya and to switch over with Anu. He happened to be on the ward that day. I told him I had someone I wanted to introduce him to. It was a bigger, taller more grown up Jasmine than when he had seen her last. The last time he saw her was over 18 months ago. He was shocked and overjoyed. He spent the next 20-30 minutes with her and then Daya. I left them to it. He played with her. They went for a walk around the ward together. They were best buddies by the end of it. She cried when he left. I took these pictures secretly.

This is love.

The Little Princess Trust

Anaya is five years old. She has donated 12 inches of her hair to the Little Princess Trust.

Her Aunty Jenny donated 9 inches a year ago. She also donates blood as often as she can. She knows how much blood Daya has needed during her treatment.

Anaya donated her hair in loving memory of Kaiya Patel who wanted us to #payitforwards. Anaya is the same age as Kaiya. And in living support of the living bravely Kira.

To this day it pains me that Kaiya is not with us now.

What does the Little Princess Trust do?

The Little Princess Trust has been helping children and young people since 2006. The Little Princess Trust provides free real hair wigs to children and young people, up to 24 years, who have lost their own hair through cancer treatment or other conditions.

Here is the link if you would like to donate: The Little Princess Trust Website

Watching Harry Potter…the before…

She thinks she might look like Professor Snape now…

Kaiya was brave and strong and a beautiful soul. We all miss her.

Scared on Sundays

When I was a child, my dad who doesn’t say much, said that one of the best thing about me was that I was ‘fearless’.

That’s always stuck with me.

But these days I am full of fear. I bat it away. Sundays are the days we try and slow down. By slow down I mean not going out to do the food shop or rushing around doing three laundrys in one day. Our lives are relentless right now given the needs of the twins and Anaya, who sometimes gets sidelined, and who has needs just the same as any other 5 year old.

Sundays should also be the day when you don’t read anything online or in the papers. I used to love reading the Sunday papers with a cup of tea – that was BC (Before Children).

I read something today about how neuroblastoma is the leading killer of children with cancer. It has the lowest success rate or the highest relapse rate. I can’t even remember (so don’t quote me) but it was the worst of the worst. The most difficult to treat, the least invested in…

…and every day I think of my friends. But on Sundays, I also think about how my friends who have lost their children deal with Sundays. Do they still cry in the shower, do they smile sometimes, do they look for signs…do they still have a tightness deep in the pit of their stomachs…

Where do the dead go? What are we going to do if it comes back. You don’t discuss this with people because you’ll receive the only response they know ‘one day at a time’, ‘keep focusing on the positive’ and anything else. I don’t blame them. I’m grateful they have the courage to say something. I’m thankful. But there are no words that can make you feel positive when you are watching your child struggle or fighting for their life; you just need to keep mentally strong. I’m lucky I can.

However, I get scared on Sundays in particular. Sundays is when it just hits you more than other days. Sundays is about family time. The end of the week on the cusp of the new. A bit like us right now sailing out to sea sometime soon after all the rapids. Who knows where we will go next…or what will happen.

It’s much easier to get shot when you are still; and so thoughts turn to bullets and they cut deep.

I’m scared. When I read all the stories of other children, when I have seen as much as I have, I’m scared she’ll die. Of all the things in the world that could have happened to us, why this? Why my kids?

I just want you to know that the fear never leaves an oncology parent. I do a good job at staying positive most of the time. If you have to believe in something, believe in something positive. And if the truth is worse, then lie to yourself long enough to get through.

So in conclusion, I should read less and do more on Sundays.

Good News

I have good news. As tough as times are, I have good news and I can’t wait to share it with you so here is a summary. Actually I have a fair bit of news about today.

Today marks the end of our Immunotherapy phase of treatment. Our fifth and final round of immunotherapy is complete. It has been a long, difficult and painful journey since our return from surgery. We have pushed on. She has held on. I hope it has worked.

Today, Daya slept through it all. We had an early start to the day. She played in the garden and Jasmine and Daya fired water pistols at Nani. We gave her some meds, hooked up her milk and off we went. She fell asleep on the drive down.

On the way down in the car it hit me when I heard a familiar song, ‘if I only could, I’d make a deal with God, I’d get him to switch our places’ (Kate Bush), I realised that I had quoted it on the blog before. We have come so far since that day. I cried. It’s hard to know what to feel sometimes when you can feel anything. You have to control your mind and stay in the right headspace.

We took her baby too. I guess the baby needs hair now. She still has a Hickman Line. Daya’s upset her NG tube came off. I’ve done some good work on this baby over the years. We disconnected the pump, and with that simple, small action, we were done.

These wonderful ladies have looked after us for so long. Daya carried on sleeping so we took some pictures to show her later.

We are done. We are done with immunotherapy. We have radiation left to go. That will be awful in terms of side effects. But for now we have done and conquered Immunotherapy. Thank you and goodbye, you were awful, I hope you’ve done a lot of good.

I love the NHS. It has saved my life so many times, I hope it saves Daya’s too.

So we disconnected and made our way home to surprise Anaya at school. Just another day on this cancer journey but a milestone nonetheless.

Next, for months now Anaya has been carrying on and on and on and on about having her hair cut short. Anaya has very long hair. It is nice. She has decided to cut most of it off and donate it to The Little Princess Trust. She’s often picked up the leaflet when she’s come to visit Daya on the ward. This time she will be doing it in loving memory of a friend’s daughter, Kaiya, and for Kira (Kira the Machine who has neuroblastoma) who loves wigs. Kaiya was diagnosed with a rare cancer. She was Anaya’s age. And her little sister, who is fine, is around the same age as Daya. Kira is a warrior who has been fighting a long battle with neuroblastoma, and raising a lot of awareness along the way.

The Little Princess Trust is a wonderful organisation that make wigs for children with cancer. Link is here. It is very easy if you would like to do it. You have to have clean hair and you need to tie it up with several hair bands. Snip above the top band. The Little Princess Trust has some more details on their website along with good instructions. They like a minimum of 7 inches. We went for 12.

Anaya’s hair before, whilst wearing an appropriate t-shirt.

She was watching Harry Potter. The ‘after’ picture is below. Anaya has her GOSH tshirt on. We will have have her hair tidied up by a hairdresser tomorrow.

And last, but not least, Aunty Renima has gathered a big team of mum friends and they left today to climb Mt Snowdon to help raise funds for Daya.

I think it is safe to say that today was a good day.

On this day

My iphone has a little feature that shows you images ‘on this day’.

June 2018

This time last year we went in to start High Dose. She walked in confidently, not knowing what was to come, in a special t-shirt from Aunty Jenny, a cape from Aunty Claire and a whole lot of courage.

Unbeknownst to me, I took the picture that would become the image for our campaign. On this day we had no idea what was to come in terms of the urgency for surgery. On this day we walked in heavy hearted and hoping that things wouldn’t end badly for us all. High dose has a mortality risk. It’s the strongest chemotherapy and the one that ‘breaks’ your child. ‘Is she broken yet?’ Not yet. ‘Is she broken yet?’ Yes I think so. I’m not sure how much further down she can go.

Nurse: ‘Don’t worry. She’ll come back.’

The administration of the chemotherapy itself lasts only a week. And you also have a stem cell transplant. The damage that the chemotherapy does accounts for everything else that takes place after. Some side effects are life long.

Daya didn’t make a sound for two weeks. She had a fixed fever and would often have rigours (when your body shakes). It was awful. Our nurses on Giraffe ward got us through.

June 2017

A healthy looking child with a different cape. The tumour was growing.

Today, 2019, Daya is here. Today we are home on our immunotherapy pump, meds, feeds etc etc etc. We are home. She held my hand last night. She slowly placed her hand in mine. We have come a very long way since last year. She is here. That in itself is a beautiful thing.