Slow progress

We are finishing up our third week as in patients.

I’m lonely. It’s just me and Daya, and our nurses for company. Our nurses are wonderful.

Nowhere to go. Nothing much to do. She sleeps. Watches the iPad. We paint or just visit the playroom (in isolation). She gets tired. Then we are back. We might try and take a brief walk of 20 minutes or so. Again there is no where to go and it’s windy and freezing outside. She keeps asking to go back to bed.

I have probably heard Jasmine’s voice for less than 24 hours in the last two weeks. I miss her. I can’t remember how she sounds. I haven’t had a daily chit-chat with Anaya since the weekend.

I haven’t spoken to Anaya enough. I missed her school play. Daddy was also going to miss it as he had to work. He went with his plus-one, surprise guest who Anaya was very excited about and Daddy stopped ‘tapping’ (working) for an hour.

I’ve spoken to Daddy for maybe half an hour in total this week. That’s half an hour spread across the entire week.

I’ve spoken to our Fixer for longer than I’ve spoken to Daddy. I love our Fixer.

So we are still home away from home.

An awesome nurse lifts you up for the whole day. They know when it’s hard for you. They manage to make you laugh. They do funny things with Daya.

Nurses are smart. They read people. They see through the facades. They know some parents pretend in front of their kids and some just can’t hide their feelings. They see everything. I think maybe, that as hard as I try, maybe they see that I just don’t have any fight left in me.

I’m tired. I’ve grown old and I’m still scared. I am always hopeful but this type of cancer isn’t one where you can drown yourself in blind-positivity.

We sit together. We play together. We walk together. I sleep after she does. I get up when she cries and lay with her in her cot.

Daya met some characters from our local Panto. These two nurses are hilarious and our very own in-house entertainment.

Nurse Kimmy gave Daya her first ever lolly. She was somewhat shocked at my parenting when I told her that Daya has never had one. She gave her one more!

We changed her dressing. She was bored with our situation. My dad watches TV like this with his arms folded! Then Ruthie turned up in the morning….

This is Ruthie. This is Daya with a sick bowl on her head. Ruthie put it there. They love each other. They are naughty together and have a lot of fun. They spend a lot of time together messing about (getting her blood pressure, doing her observations, giving medication, setting up pumps…). Daya lights up when Ruthie walks in. And she calls out her name when she leaves the room. Ruthie talks to her all the time. Daya listens and says things back. She makes me laugh so hard my sides hurt. Ruthie always turns a bad day into a good day.

This is Daya expressing her sadness when Ruthie said goodnight to go home. ‘No. No. Ruthie’.

She no longer says goodbye. She sneaks out.

My ‘grandchild’ is also being well looked after.

Licking butter of toast. Not actually eating the toast. 11:30pm at night.

After a difficult night, she slept in and we went for a play session. She didn’t stay long and it tired her out but she was distracted and happy. Our play lady is fun and loves her art and crafts. Every kid in hospital loves a good playperson.

Ruthie is awesome. They are like two peas in a pod. Daya gravitates to her as she does with her other fave Trudie. One is calm and quiet and the other is comedic and animated. There is a lot of love. They are amazing. Daddy even misses them when he’s not here!

Jackie came up to play with Daya. Yes the baby is wearing Jackie’s glasses. Jackie is funny and good with kids. They haven’t seen each other for months.

Everyone loves the fish on the floor – it certainly helped get Daya out of bed for a few minutes. Everyone becomes a kid again in this room. Light is projected on to the floor to make a rockpool with fish that swim around; and the fish and the water react to your movements.

Daya was introduced to Frozen for the first time. We had a very loud sing a long. Sarah is funny and a great singer. She knows all the Disney tunes. The nurses came round and joined in.

We fill the time as best we can.

One of our doctors raised money by swimming in the freezing Serpentine. That money was used to buy play things for the kids. Play things such as the art and craft stuff Daya has used. That’s love. Daya made her something.

Some footballers came to visit. They loved the fish machine. They couldn’t keep up even with their nifty footwork.

Even with footballers and fish for company, the moments are fleeting. Most of the time we are in the room and in the cot.

But the best moments, filled with fun and laughter, are the ones we cherish the most. The moments when our nurses make her laugh or smile.

Measures

“…in a situation like this some people will surprise you and some people will utterly disappoint you….you get the measure of an individual in situations like this…’ Anu, November 2017

A whole year later….

‘…you know Pam… you really get the measure of a person when something like this is going on…’ Renima, November, 2018

The fevers

We are going into our third week as inpatients. The first week was a long and tough week. It was constant and difficult. It was full of fevers and vomiting. Weakness and fatigue. And all else that comes with being unwell. Daya is a fighter. She has little choice in the matter and she’s tired of fighting.

We rushed into our local and have been living here all this time. It’s a home away from home. Our consultants and nurses are awesome. They are just wonderful. One has made me laugh so much my sides were hurting. Another makes me feel safe. Another loves Daya so wonderfully. Another sings songs to her…..

Obviously no one wants to be in hospital or to have to go through all this but when you have little choice in the matter you want to ensure you’re with great people.

They have missed us. We have missed them. Daya has grown taller and skinnier. They have noticed.

Our Gosh team, who are also a home, more like the ‘holiday’ home given the time-split between the two hospitals, have been involved in all decisions. Our Fixer sorted us out initially and quietly multitasks running things in the background. Daya’s consultant has been involved all the way through which is awesome. He takes an active interest, he takes the time to stay on top of everything. He listens very carefully as he doesn’t want to miss anything. He never talks over you. And he is our go-to-guy on all things Daya. He’s one of your golden cards in Top Trumps. Imagine having Luke Skywalker specialising in neuroblastoma. Wrap it up into one friendly bundle and you have the boss.

Thank god this country has such magnificent hospitals for children.

They work so hard. I love the NHS. I love our team on Rainbow and I love GOSH. They all work hard.

They were so happy to see Daya. We would all rather not be here. Such is life. We are all inevitably woven into the fabric of each other’s lives.

It’s a beautiful thing to have someone in your corner taking care of your child in all the ways you can’t. It’s clear that there is a lot of love for little Daya (and Jasmine and Anaya). It makes you feel safe. It gives you hope.

Good care makes things less stressful.

Hope….

The hardest words to write are those that are buried deep, deep down within a heavy heart.

We are all fine for now. Daya has been in the hospital for some time. But our friends, who have buried or cremated their children, are not. I don’t say those that have ‘lost’ their children. ‘Lost’ might mean someone wasn’t paying attention. No. They have paid such close attention to the point where they have exhausted themselves time and time again. They aren’t lost. They are gone forever. It pains me deeply that this is part of our reality. I want to go back to that life where we were blissfully unaware of such things.

But today families are without their children. Cancer got them. I know far too many. It actually makes me feel physically sick to think about how many lives have been cut short. And these losses aren’t sudden. They are preceded by countless months or years of awful treatment. This Christmas they won’t be here. No presents to buy, one less person excited on Christmas morning, one more empty chair. They won’t be in the carseat when you look back to check the mirrors in the head rests. No one will be singing along or smiling back…

Many people think that our lives must be great now or better after surgery.

Surgery was well researched by us and our medical team. Instead of stepping back and treating us like loonies, which they could have done, our team stepped up and stepped into our discussions. For that we will always be thankful. Surgery was also exceptionally high risk, there was no margin for error and it was successful. It was an unbelievable outcome for many.

There are two conversations that stand out in my mind.

When I first met the surgeon;

He asked me if I had any questions? Any at all?

Daddy: None that we can think of. I think you answered most of them in our call and today.

He nodded, looked at me and daddy and then back at me and said any questions? You can ask me questions at any time.

I looked straight back at him and said ‘nope. I have no questions. All I know…. is that I needed to…get.her.here….to you. I needed to bring her here and I needed it to be you. Beyond that is out of our control’.

He looked back at me. Looked at his computer. Nodded. Stilled himself and said ‘oh fuck’.

Only kidding! He didn’t really, he said ‘and when your daughter is in there, she is my daughter too’.

We also exchanged words immediately before the operation.

I’ll never forget it when he came out and told us that he had gotten everything out. And I’ll never forget watching her through the immediate recovery period.

So surgery was a part of our journey. It’s a phenomenal part and I’m thankful and relieved both at the same time. But it was never the end of our journey.

Our treatment journey continues a bit longer. And hopefully Daya’s life will go on forever.

The sad thing is that, with neuroblastoma, surgery doesn’t guarantee that you will survive. Sometimes nothing can beat cancer.

You can do everything and still not make it.

Months ago, I sat with a child on the floor in our bay. He hadn’t been eating. I fed him some of our fruit. His dad watched us as he rested in his seat. Daya was asleep in the cot. I spoke. He nodded. He edged nearer and leaned on me. I gave him a cuddle and I kissed his bald head. I asked him if he wanted some more grapes. He said yes. His dad smiled. I sat there peeling grapes and orange segments and he ate them. We didn’t talk. His cancer affects the brain as well. So he stays fairly quiet. He died very recently. It doesn’t hurt any less that it’s not my child. And nothing is guaranteed.

These children they come into our lives. They fill us with hope and then we watch them suffer. When they are gone it makes no sense. The little shoes in the hallway, the empty car seat, the story books beside the bed….

A nurse and a friend told me a story of how a child with neuroblastoma died on her shift. She paused at the end.

I said: why did you tell me that?

She said, after a long pause, ‘that child died quickly. He’s gone. You still have hope. HOPE. Pam you have hope. And our little day-day is still here. You have that.’

Hope. Definition: a feeling of expectation and desire for a particular thing to happen.