Life is delicate

Daya and I walked towards the lift with another family. Daya was in the pram. Their child was in a pram as well. They were side by side in the lift. I was going downstairs to collect pizzas for our nurses. I had a spring in my step. They were going to the park. Daya and I had just spent a lovely hour in the park. I was trying to ignore the fact that I wouldn’t be seeing the girls this weekend.

Me: you’re all matching (their coats were matching and the mother and daughter had matching trainers)

Her Mum: Yes. Yes. And she smiled at her daughter.

Daya: awwww cute.

Her Dad smiled and her mum looked at Daya and said ‘you’re cute too’.

The lift doors opened.

Me: how’s everything going? I saw you yesterday but I haven’t seen you in a while.

Dad: they told us yesterday there is nothing more they can do. The cancer has spread to her brain and now they will just offer us care to manage her pain.

Me: (I stopped in my tracks and was holding my breath.) Im so sorry. You’re wonderful parents and she’s is so lovely. (I stroked her little bald head). And together in the silence we, all three, started to cry in the reception of GOSH.

Her mum was crying. I started to cry.

I’m just so sorry. I’ve seen you come and go so many times and she’s so lovely. This is the worst thing any parent can go through. You’re wonderful parents. She’s amazing. I’m heartbroken.

I just hugged her mum and held her. And then I hugged him. And the tears kept coming.

They are going to have to face the worst possible parenting scenario soon. They will have conversations they never dreamed they would have. Life will weigh even more heavily upon them. Their broken hearts will be broken further. They will watch their child slip away until she takes her last breath. No one will wear the little matching coat or trainers any more.

They will have to go through the emotions and motions of losing a child. Our nurses will smile and laugh in front of Daya and then lovingly respond to this family’s needs in the same shift. They are heartbroken too. Nurses are like soldiers. They put duty before all else. Tonight we are asleep on the same ward with our babies. Mine is here watching her iPad and not going to sleep. She’s here because you helped to save a little girl’s life. Our little friend is going to slip away from us with every day that passes.

You aren’t born to die. That defies norms and expectations. You are born to live. Please, go do something this week that makes you feel alive. Go live your best life.

I’ve got wheels!

The adventure continues.

Daya has had three big invasive test days last week. She’s been under GA twice. She’s had tubes down both nostrils, she’s had tubes in her airways, she’s had lumber punctures and she’s….got a new trike which is cheering her up.

Her new trike! We are getting out a lot more. I’ve been racing up and down the corridor. We have had some brief trips to the chapel and out-out. She loves it.

She’s worn her first pair of jeans. She’s looking more grown up. The baby that first came here in 2017 is growing up.

Most importantly, Jasmine came to visit for the first time in three months. She’s been to visit two weekends in a row.

Our student nurse finished her placement and has gone back to studying. She was lovely.

Daya has been riding her trike everywhere. Even down to her scans and procedures.

These pictures don’t capture the malaise and vomiting. The sleepless nights or irritability. The countless nappy and bed sheet changes. The bouncing back from a vomit. The demands to go to the park.

They don’t capture how draining and isolating this situation is. It’s lonely and difficult.

Bears in the Chapel

Daya handed me a little card that was resting on the back of a pew in our little hospital chapel. We go here because it’s quiet, uncrowded and shiny. It’s a beautiful part of the hospital.

It had a bear on it. A bear. My little bear found a bear. And then we found three more bears. A bear though, a bear. I’ve never seen a bear at church. So I’m going to keep these safe. That’s all. A bear…

So do I

I miss your life.

I know it’s all temporary but it really is, all of it, temporary as well.

I don’t put you to bed. I don’t make your porridge. I don’t comb your hair or kiss you goodbye. I don’t cuddle you when you come home. I don’t cook your dinner. I don’t give you a bath, read your book or kiss you goodnight.

I don’t hear your voice or your stories. I don’t hear you telling me off or asking me questions. I don’t see you cuddling your sister or hiding the tv remote so that she won’t get to it.

I don’t know if you’ve had a good day or bad day. I don’t know how you’ve changed or how life is changing for you.

I am not there.

Cancer has hit all of us and fractured our family. I know you are sad. I know you love her and want her home. I know you want this to be over.

So do I.

I can’t guarantee she’ll always be here but I’m trying my best to save what we hold dear.

A new way of living

And so begins another weekly update of the passing of time during treatment. Anaya came to visit last weekend. Daddy and I did a handover of the important details and they left. Daya had fun playing with Anaya. She loves it when she has visitors. Most of all she loves it when Anaya comes. Anaya waited patiently for Daya to wake up.

We had to part with one of our favourite nurses this week. She’s awesome. She’s going off to do some interesting things in the world of childhood cancer. We will miss her a lot but we are also very proud of her and her new career choice. Daya made her a card. Daya has had an unsettled week but is improving. Her team have been looking after her very well. She’s also been on the loose this week. Ive made a mad and exhausting dash to the park every day as we have a small window of freedom. Elephant came too. The nurses have been coming into our room for Baby Shark, Drake and Maroon 5. We also have a wonderfully funny team of volunteers from Radio Lollipop that visit the kids some evenings for a quick activity. They have been dedicating songs on the radio to Daya and her ward mates. It is wonderful to have such dedicated volunteers. Speaking of which, below is a lady in Yellow who is a GOSH volunteer. She has watched us quietly from the hallway for the last two years. She’s been unable to play with Daya due to how unwell Daya has been for such a long time. Last week as she was leaving she said hello to Daya who was sitting in the corridor on my lap. She magicked a green tub of playdoh from her handbag and sat on the floor with us. I made a frog and a crocodile. It was a big moment for us all. It was the first time she had been able to play with Daya. They both played with my playdoh creatures. The following week Daya welcomes her into our room to play hide and seek. She’s wonderful. She lives far from the hospital and has volunteered for many years. For two years Daya has been unable to play. That half hour was big for us all.

So Daya has progressed from the corridor ‘where we can see you’ to borrowing a trike and heading off into the wild, wild west badlands of GOSH. First stop, the chapel which is also the furthest part of the hospital. A beautiful little sanctuary. It’s also very special and sparkly so I thought she would like it. As Daya’s hair has returned her nurses have said it looks like Lego hair.

The awesome team at the Lego store in Leicester Square carefully crafted a little Lego figurine, complete with cape, to match Daya’s picture. We are loving this! It’s been a busy week. Spread a Smile visited the ward again. A fairy sang to Daya and a magician did some cool tricks. He also played hide and seek with Daya. And then the PJ Masks turned up!! They sang Daya’s request of If You’re Happy and You Know it…It is wonderful when we have visitors. Daya spends a lot of time in our room and isn’t allowed to go to the playroom which is opposite our room. She watches the other children going in and out all day. She calls out the names of nurses whom she knows as they walk by. They don’t always hear her. She loves company.

It’s not easy watching her look fed-up or down. It’s not easy for her.

Uncle Tom came this week as he was working nearby. It was the most company she’s had all week. He made her laugh a lot.

Your turn Ready …go down…(G, this is what your husband gets up to when he’s at the park!)

Literally the entire length of the slide. It’s tiring playing and fighting cancer. She managed half an hour.

Back home we spent our last day with Nurse T having fun and persuading her that leaving us wasn’t the best idea she’d ever had and wishing her the best of luck in her new role.

Daya likes helping. She helped make her bed. We have promoted her to a big girl bed. Daya made sure her nurse did her obs correctly.

We pass the time as best we can.

We play hide and seek by hiding in the bathroom (with our pump stand).

And when you wake up at 5am who better to see than you favourite nurse Nikki…

Happiness is a hug and a hero.

Normalcy

She said: We are hopefully going home soon….not sure what to think…looking forward to being normal but it feels like nothing is normal…I’m not sure if I’m looking forward to it at all actually…what was it like for you?

Me: do you want the truth?

She nodded.

Me: It was difficult. When you are here (in the hospital) you feel like you are making progress. You’re doing things. You can focus on that. Initially I focussed so hard on being ‘normal’ that it made things harder. I was trying to make the most of our moments together. You can’t go anywhere really because of the infection risks and Hickman Line. I do remember feeding them both and watching them look at each other and Anaya was dancing around in the background. I couldn’t look at her without crying. Her little innocent face. The fact that we could lose her. It all crashes back into your world. You don’t get to leave the cancer behind. It follows you everywhere.

For me, every time I enjoyed a moment with her, trying to saviour everything in case she might not be here next year (I couldn’t use the word die) it would hit me. I’d have to leave the room so she wouldn’t see me crying. That was early on. It is overwhelming sometimes. You can focus on treatment here. When you are home you wait for the fevers and rush to the hospital and focus on that there. How can you be normal when your heart it broken? It’s ok to cry. It’s ok to feel that way. That is normal. It’s ok because you will feel vulnerable and exposed. Everyone else will be at softplay or play dates, music classes or coffee mornings – you’ll have to ease into your new normal don’t fight it. All I’m saying is, it’s hard and if you want to cry then cry. You’re not expected to be running through the grass barefoot and singing the ‘if you’re happy and you know it’. Go be your new normal. Don’t be hard on yourself. I just want you to know that its ok to feel all these things. And it’s ok to make sure you’re completely exhausted in order to sleep.

3 weeks later.

She grabbed me and hugged me.

Me, calmly (but slightly worried): everything ok?

Her: It’s been so shit. You were right. It just keeps hitting me. Im glad to be back and I’m not. It was exactly as you said. It just comes in waves. I can’t be around other mums who complain about stuff…

Me: You mean such as moaning about school traffic and how Bertie is allergic to caviar?

Her: (laughing so hard she started crying). I love you.

Me: you just love me for my snacks….I’m not going to tell you it’s going to be fine but you will find a way to function to make it as ok as possible.

Us, when we were trying to be normal for a few days….

It was hard to look at her and not cry. Emotions were overwhelming in those first few weeks.