Skin side effects

So far, during our immunotherapy treatment, Daya has had an easy-ish time skin-wise.

However, now she is frantically itching all over due to dry skin. We are using a lot of good products however one of the medications she has to take for her immunotherapy treatment to be successful has this damaging side effect.

Many people who know about Daya’s story have seen the operation as the peak of all these events. It was a very difficult peak to climb for us but it was a peak. Whilst it was and remains a blessing to have had the opportunity to do it, the support of so many thousands of people around the world and the 100 per cent removal of the primary tumour, we and she remain in this protracted nightmare. This is because neuroblastoma is a particularly difficult cancer to destroy and it is very aggressive. Because it is so rare it doesn’t get much funding. Many people haven’t heard of it and some politicians might argue that it’s not cost effect to distribute money towards its research. It accounts for a larger share of deaths from paediatric cancer than others with more investment in research. And therefore we have to have a lot of rounds of different types of aggressive treatment. I have wondered from my point….

This post is to simply let you know more about what these little kids go through. We are lucky to have made it this far. And as they say ‘this too shall pass…’

When Daya met Jackie

GOSH has a school for children. Daya’s school teacher is called Jackie.

I don’t know her surname and….We don’t need to because like Beyoncé, Jackie is so fundamentally important and a completely awesome entity that she goes by one name and one name only.

Daya loves her. I love her. She’s awesome. She’s the most amazing person. She’s fun and always comes armed with a trolley full of fun stuff. Stuff that she has planned out carefully and all links together. The woman’s a genius and she’s been our genius. She’s brought Daya back to life again. She represents everything that is not medical or invasive. She represents fun and learning and exploration and childhood.

Several weeks ago this lovely little dynamo turned up outside our door and so began one of the most beautiful relationships Daya has had in months. They are restricted by space. They sit in a mat on the floor and engage with each other in this one tiny spot.

A few weeks ago Daya’s doctor was in our room checking her chest and Daya was sitting their forlorn, whimsical and silent. She had her head in her hand. Whilst she was allowing her access to her body she was also ignoring her; her behaviour was tolerant and detached.

*tap tap tap* at the door. With one look, Daya exclaimed ‘Its Jackie. Its Jackie’. Up she jumped. I’ve never seen her doctor look so shocked. She shook her head and smiled in disbelief. ‘Oh my god Daya…who is this?’

Daya: Its Jackie!!

Me: Yep. This is Jackie. Daya’s ok she’s just fed up of living here that’s why she’s not talking or playing today; but Jackie, Jackie is something else. Watch this. Watch Daya when she comes in. She’s special…just watch them together. You’ll see.

Everyone knows about ‘Daya & Jackie’.

I’ve heard it said that the best love is the one you find when you weren’t even looking. Well this is the love that Daya has for Jackie.

Since Erin left, Jackie has been the only person Daya can play with where there isn’t a focus on anything medical. There is no probing or discussing. There are no gloves, wipes or syringes. There are no bloods to be taken or tightening of blood pressure cuffs. She doesn’t need to assess the person or defend herself. She doesn’t need to be examined in anyway. She feels safe and free with her. I make a particular effort to keep everyone out of the room when it is ‘Jackie Time’. Even I leave. We have sneaky peeks through the window. Sometimes they are doing messy play, sometimes they are at the table in deep discussion, sometimes Daya is directing things or listening carefully.

Jackie has an intricate understanding of Daya. To be able to develop a child one needs to want to engage with them on the child’s terms. She’s clearly a very experienced teacher but she makes it all fun. It’s all learning through play. She has a lot of energy and she reads Daya all the time. Many of these children are being robbed of expected childhoods; childhoods were you wake up everyday and go exploring, where you get to walk around and meet other children…

She brought a play kitchen into the room to encourage Daya to play with food and eat something. I went to the shops and stocked up the little kitchen with real food. She bought couscous in to play with. The next day they poured water into it…Daya’s long hospital stays have deprived her of a lot of multi sensory experiences.

With Jackie she’s not a sick kid anymore. She’s just a kid having fun. Daya has been learning a lot and they do fun things together. Daya cries for her when she’s not there.

Having a school in a hospital is wonderful. The GOSH school is brilliant. Jackie, ‘The Jackie’, is wonderful.

Jackie made a great book for Daya of an hour we spent at the park. It’s the only time we have left the hospital together and it was a lot of fun for Daya to have Jackie with her. They spend a lot of time chatting together. They are always discussing something.

Sent from my iPhone

When Eddie met Daya

I love love love Spread a Smile. They are a charity that visit the ward every Thursday and they bring entertainers with them. Peppa Pig, Chase from Paw Patrol, the fairies, the magician and the singers you see in posts are all from them. They make everyone smile: children, parents, nurses, doctors, play workers…

This week they surprised us with….drum roll please….Eddie Redmayne.

I popped out to say Hello to one of the lovely ladies and got a big hug…and bizarrely who do I see next to me…but ….not Peppa Pig….not the fairies….no…it was Eddie Redmayne.

He was lovely. He spent a lot of time talking to us and then came back again. He is unpretentious and down to earth. He was engaged and interested in finding out more about life with paediatric cancer. He has a daughter Daya’s age and a younger son.

A nurse and a mother

“I’m so proud of you Daya”, said our nurse filled with pride.

Daya has been improving this week.

I am so proud of her. She’s been amazing. Everyone has been so proud of her. She’s shown courage, resolve and kindness.

She’s amazed us all.

Today she had an hour long scan. She had to stay still and sandwiched between two pieces of machinery. She couldn’t move or bend her legs. She also had to have a lot of milk pumped quickly into her stomach whilst laying down. She lay back and put her hands behind her head. They strapped her in and she was secured.

‘Are you ok, Daya?’

‘Yep’.

She then had to lay still for an hour. I got twitchy. She didn’t. She was lovely and calm and took everything in her stride. She sat up at the end and said ‘thank you’ and ‘lemme put my shoes on…ah thank you’. She put her shoes on and walked out to her ultrasound appointment straight after. At the ultrasound she decided the wait was too long and that she wanted to go back to her room, she said ‘I’ll take my pumps. Me going back’. She then tried to move her pump-stand forwards. She couldn’t move it easily, ‘Oh, I got so many pumps, too heavy’. Her nurse was smiling all the way through.

We then had to go back for another scan. She lay down again and was great. She was strapped in and behaved wonderfully well. We had to do this again an hour later.

She was brave. I explained things to her beforehand and we took our baby down too and one of her favourite nurses. We also had a great lady in nuclear medicine who was amazing. Child friendly staff make a massive difference. The nuclear medicine nurse had come up the evening before to explain what would happen and how it would certainly be distressing or that she could vomit and we should brace ourselves.

She was calm and relaxed all the way through. She was polite and aware. I’m proud of her.

If you look closely, our nurse has the look of a concerned mother. The type of mother that doesn’t want her child to go through this and who just wants it over. She also has the look of a proud parent at the end of the scan. If you look closely, you’ll see she’s holding Daya’s hand and watching her all the way through. If you look more closely you’ll see that Daya’s hair changes style. She was stroking her hair most of the way through.

That’s our nurse. That’s my nurse and I am so proud of her too.

The fun team

The days are long and the moments of fun are brief but when you put them all together, this is love. Indifference is the difference between a nurse who ticks boxes and goes through the motions and one who understands and is actively engaged in performing her role to the best of her ability everyday. The latter is built into the fabric of one’s being.

When you colour in together…or decide to ride around …

When you cook together to encourage eating or play music to stimulate the mind and soul…When it is hide and seek time…

When you get cuddles from your Doctor or your Nurse…When you tell her to go down the slide and you can’t believe she did it for you…

When she has been trying to carefully fatten you up everyday…

When they play with you and take care of you. It is all love. It is not easy being in hospital, handling conversations all day and trying to entertain a trapped two year old. They invest themselves into every day and in turn into your day to ensure you’re supported and well looked after.

We love them for that.

The Duet

There are nurses and then…there are awesome nurses. Daya loves her nurses. She knows them by name. She calls out their names when they walk by her room. She jokes around and laughs with them. She gets hugs and conversation.

These two always have a wonderful time.