Little Freddie

I’ll miss you. I’ll miss your energy and messing around together. I’ll miss how you smiled broadly and lit up when your mummy walked back into the room.

I remember that you hated being in hospital. You hated it. I loved your disapproving looks. You preferred silence. You liked to keep quiet and play on your Nintendo DS. You tackled cancer with the quiet and unwavering resolve of a calm and wise old man. You had no choice.

You loved being with your mum most of all. You loved it when your Dad and Freya would come that visit or take you home.

The rest of the time you quietly endured the long periods of treatment. You loved the trip to Eurodisney. You loved Ailish and some of your other nurses. You had so much fun with your play workers.

You weren’t sure of me at first. You didn’t know if I was a ‘medical’ person. It was only when I was ‘super-silly’, crazy silly till I made you laugh, that you started to acknowledge me. When I threatened to come over and ‘tickle you until you peed your pants and all across the floor’…you spoke to me, you gingerly looked over your games console, smiled and said ‘you wouldn’t’…………….’oh but I would…’…

I had to be as silly as possible and as off the wall as possible to engage you. I liked it when I made you smile. You quietly observed everything.

Do you want some sweets? Lego? If I’m Batman….you can be my Robin…how’s about when Daya’s asleep you teach me how to play on this Nintendo…oh I’m not very good…’hmmmmm’…I literally have no idea how to use this games console…’what’s that?’….’this thing…it’s called a games console’…….’no it’s a Nintendo DS’……

‘Ok….have you got my sweets?’

‘I saw your baby…’.

‘Did you? Was she cute? If she was cute then she was mine….wait where did you see her? Is she trying to escape….’

‘Yep. It was yours…she is cute. My mum said she’s got what I’ve got…’

‘How’s it going Freddie?’

*silence* You shrugged your shoulders.

‘That good eh…me too…I wish we could just leave, don’t you?’

‘Yeh. I want to see my sister. My dad’s coming to get us when we go home’.

‘It won’t be long. You’ll get to go home and sleep in your own bed, eat what you like, cuddle Freya…sit on the sofa…’

‘Yeh’

‘I’ll miss you….I might get lonely without you…I’ll have to be naughty to keep myself entertained…’

You smiled.

‘I will. I’ll miss you. But it’s far better for you to be at home…’

I bought you some Lego. The last time I saw you I left it for you. The last time I saw you, you were curled up like a baby. You were fast asleep. I could see you were skinner and tired. So, so tired. I saw your mum, chatted briefly and gave her a hug. You were in our old room. I wanted you out of there and back home. I saw your mum and I knew we had both walked in the same shoes. Sleepless nights merged into one. The fatigue was real. So was the fear. I knew what she was feeling. I pulled the blanket up over you. Leaned down, held my breath, stroked your hair, smelt it and tried not to cry.

‘Let him sleep… you keep strong. You’re awesome. I’ll be back. You’ve an awesome mother…I’ll be back soon’.

I hugged her tight and left. I never got to see you again. I’ll remember you for your quiet, strong and enduring resolve and your love for your family. You were a wonderful son and an incredible brother to little Freya.

Grab bags

And then came the day that I put them away.

I unpacked the grab bags a few weeks ago.

Our community nurse said, ‘wow…oh my god wow….that’s a big deal’.

Yes it was. I unpacked them and got rid of everything. Nappies, spare toothbrushes, dressings, a random spoon, snacks, baby socks, syringes….the list goes on. The bag was full of plenty of ‘triggers’ but I tried to not let them get to me. These bags were ready morning, noon and night. Packed with most of the necessary supplies for the first 24-48 hours of a hospital stay. Portable enough to get into an ambulance or carry alone. Every time we came back home, it was repacked. We had them on rotation. I hate these memories.

Daya doesn’t have a Hickman (central) line anymore. I think she had around 5 or 6 central lines in total. The Hickman line was a source of many line infections. I hated them. I never hugged her properly until it was all out. Now I hold her tightly, up close to my chest and I get to squeeze her tight. I can’t bare the thought of empty arms.

The bags have gone. Let’s hope they never, ever come back.

Thank You

Thank You to every medical professional who has saved and enhanced our lives.

You are our heroes.

Shit weeks

I wouldn’t even know where to begin to explain the detailed conversations and grief that I have experienced in these past three weeks. The following may be an uncomfortable read.

You need to stay away from all these people. It’s not good for you.

‘These people’ are my people. Just like you are…these people are my people.

Two children have passed away suddenly within a week of each other. The parents don’t know each other. One more is in palliative care. All with same cancer as Daya.

We are parents. Being a parent changes everything doesn’t it. We are mothers and fathers.

We grieve together. Can you imagine what it would be like to lose your child for a few hours? What about if they suddenly weren’t coming back anymore …

‘I couldn’t possibly imagine…’

Often, when an oncology parent hears those words we cringe inside.

The only suitable silent response I had, which I shared to make everyone laugh on the ward, and which was greeted with nods was ‘well go on…go and sit in a corner and fucking try….get off your phone and your social media and your bullshit whatsapp groups and really try to imagine what it’s like….let’s see if you can get to three minutes…’

You’re really funny… and you’re right. Thanks for making me laugh.

But we don’t say that do we…that’s impolite and it’s more polite to ‘suffer fools gladly’. A fool always thinks they are right. A smart person knows not only when they aren’t right but when to shut up.

When you are weak I will carry you. When you need a cuddle, I will come. When you need strength, I’ll give you mine. When you need to talk, I will listen. When you need to sit, I’ll sit beside you. When you can’t breathe, I’ll hold you. What you are going through, the loss of a child, is the worst possible tragedy any human can experience.

I know how much it meant when Jasmine came to visit, when Anaya sat in the cot, when Nina danced around the room, Renima bought cupcakes, and Lucinda did water painting and Tom with his hugs and Hey Duggee stickers; when you came and sat and took time out it meant the world to us.

Childhood Oncology is a very lonely place. That’s why I won’t turn away. It’s been an awful and difficult month for me but I live in fear not grief. Grief is much, much worse.

Losing a child completely shifts the axis of your life.

Childhood cancer changes you. I’ve been through trauma and so has she. I’ve seen too much. I’m still processing and trying to forget whilst healing her and keeping on at being the best mother I can be. If you see me and I’m with my children, I’ll still be smiling. I keep them very separate to my grief and my pain. I keep that tightly hidden away from them.

But tonight, when I heard about another little friend of mine passing suddenly I broke in front of them. I was reading a book called ‘We are family’ by Patricia Hagerty. I had just received the news of his passing and had to rush in to put the girls to bed. As I was reading, I started to cry. Daya and Jasmine looked at me. I couldn’t get the next line out.

My little friend doesn’t know she’s dying. I always spoke to her 1-2-1 however with Covid lockdown Anaya is now home. They FaceTimed each other and had so much fun and laughter.

When I’m better we will be best friends Anaya, she said.

I froze and my heart sank.

I’m still deciding on what and how I will tell you.

My feelings are hurt. Im full of fear for Daya and for us as a family. I watch her closely. I remember when she got the all clear; for me the hardest people to tell were my friends whose children had passed away. I told them amongst the first. I called them on FaceTime. They were the happiest of the lot.

Thank god. I feel like there is hope in this world. Thank god. Your girl…our precious girl is ok. I’m crying in the taxi.

I never want you to feel what I’m feeling. I’m so proud of you as a mother and father. I’m so glad our little girl is here.

Oh Pam Pam Pam… you deserved this. You really have all been through too much. She’s suffered so much…too much.

They were the happiest. There was a relief.

There is also fear because we all know how aggressive this cancer is.

I was on the phone to an oncology friend when I heard that my little friend had been given weeks to live. A message popped up on my screen during the FaceTime call. ‘Can you talk?’

Half an hour later. I put the call down. Let out my breath. And I called the other friend back.

They’ve told me to go home. There’s nothing more they can do. The palliative team will come if there is any pain relief needed. Pam….I’m scared…I’m very scared….

Me: I’m scared too… I’m here. I’m here all the way through…Let’s get through this…

Hakuna Matata

I might miss lockdown….there is a lot to love about lockdown…and before you ask yes it is very different from isolation…

Homeschooling is done early and is, sometimes, over with quickly. So in the evenings Anaya and I have been cuddling and having some life lessons…it’s the most chilled out ‘one-hour’ I’ve had in ages.

And these words from Mufasa resonated too…

And then we sang…