Christmas magic

For us, Christmas is about spending time together. For the last five years we have been in hospital at Christmas.

A week ago we had a change of plan to our treatment. Immediately after our chat I updated our local team who had also been waiting upon our news.

Now this is where Nurse Clare comes in….’so we need to reduce the TPN time. We need to get you home for a few hours…it’s Christmas…’. I didn’t have any expectations.

And, she put her plan into action. The dietician got stuck into the detail. The pharmacist ordered the TPN for a few days. The nurses chased down the bags and put them up as close to 6pm as they could. Clare loves Christmas.

Fast forward to Christmas Day, Daya spent 4 hours at home. Mostly tired. We were together. Usual chaos resumed. Jasmine started crying in the car home as soon as Daddy sat between her and Daya’s car seat. Jasmine misses Daya terribly. She loves saying her name. She longs for her. She loves seeing her. She loves sitting down next to her and following her around. Daya, however, prefers her independence and distance. She’s not used to having others around and she is fatigued. She’s also not used to all the noise. She’s still young and has spent a lot of time in isolation. They have moments of fun when they play side by side. Jasmine loves playing with anything Daya is interested in. She follows her around the house and shares her food.

Anaya meanwhile is walking around like Head Bear Cub. She finds them funny. And is claiming her stake on all things toy and tv related. She’s also ‘bored’. We haven’t had the same Christmas magic of previous years. We are utterly exhausted in every way. We drive back and forth to the hospital and when Daya is allowed out she has a sugar drop and becomes tired and irritable.

Daddy and I are worn out. It’s just us at Christmas. Daddy has switched to be at the hospital and I’m at home. He’s been in for the last two weeks. I was getting between 2-3 hours sleep a night which was taking its toll. I now do four round trips a day. I’m with the girls at home. Daddy is with Daya. He works when she’s asleep; in the car or late into the night. We don’t talk to each other. I’m the taxi driver and he’s the carer, and at home they are all together so it’s non-stop chaos. He’s also making plans for his father’s funeral from the hospital. It’s shit for everyone. He is tired. He hasn’t got anything to say. At home he immediately does more work or admin. Jasmine is still wibbly-wobbly, Daya has her NG tube which Jasmine could pull out in a head-to-head over the toy kitchen and Anaya cant find enough to do. A normal family Christmas then…..

Daya had a wonderful surprise at the hospital. The naughtiest Christmas elf, Ruth, was back in and the play team Elves sprinkled some magical Christmas sparkle around the room.

Daya loved her surprise when she returned. She was full of delight saying ‘tree, tree, daddy tree’.

Our team made it special for Daya. They are wonderful. They brought in the Christmas sparkle and cheer. They made us smile.

It’s the type of love that warms you up inside.

1am

There’s a happiness that exists between your place and mine. You should hold on to your happiness for as long as you can.

There’s a happiness that is pure and carefree. One that will never be crippled by fear, riddled with doubt or desperate with hope.

I’m terrified that Daya will die. I’m most terrified when I hear about the children we have known and have now lost. And when we lose another and another. It’s what keeps me up at night at 1am.

I share in their grief as I’ve shared in their journey.

I’m terrified that after everything we have been through we could still lose her.

I don’t have any fight left in me. I know of kids who have responded better to the chemotherapy than she did and they have still died. I know of one that’s survived. That’s all.

Maybe……We are just passing time and suffering, living in the hope that one day this will be far enough behind us for us to feel like we have made it out. We will have the potential for secondary cancers and a life time of side effects. I also have two other kids that don’t see me enough. And a career that no longer exists. I have a different future ahead of me now. I have no idea how to adapt sometimes. I just keep pushing along, behind the kids helping them to explore their potential and enjoy themselves.

This situation has put a lot of pressure on me. Often it is too much to bare. I do so quietly.

It’s nights like these when I feel the most frightened. The nights where I stay awake and scared for all the unknowns.

There is no use in worrying. No good will come of it. Daya’s body is battered but she still smiles. I hide my tears in the dark or in the shower. I don’t want her to see me like that.

Please make it.

Christmas is cancelled

This is our fourth week as inpatients….a whole unexpected, unplanned month.

We have spent the last four Christmas seasons in hospital. This year makes five. We remain split up as a family. We have had the same doctor keeping us company every year; such a lovely soul and always in his Christmas sweater.

Daddy and I have been taking it in turns to stay at the hospital. Daya is receiving nutrition (TPN) directly into her blood stream. This is to give her entire digestive tract a rest. All the relentless treatments she has had have eroded the lining of her gut and caused a great deal of inflammation. She did a great job through the first 8 rounds of chemotherapy. She suffered terribly but she made it through ok enough to keep going. Round after round she was hammered. Eventually, there wasn’t much gut lining left to be eroded.

The 9th round, High-dose, destroyed her. This is the round where she was silent for two weeks and in a constant state of fever. I remember thinking and knowing I had lost a part of her. There came a day, before we even left the hospital, where I knew she was fundamentally changed by what she had just been through. I’d lost something. More importantly, she may have lost something. Something more than just hearing, fertility etc….something more. I’ve lived in hope that she might come back. You have to be patient and give things time. I’ve been patient. She hasn’t come back yet. We have had glimmers of character and brief smiles but that is it. Maybe it’s just her body that is too weak or maybe not. She really is just a shell of her former self. She loves messing around with her Daddy. He makes her laugh. She’s not the same though. It’s taken it’s toll. She’s been damaged and hurt. She’s been to war and she’s not come back the same. We should not underestimate the enormity of what she has endured simply because she cannot speak her truth. I’ve seen it. I know. It was horrible. It’s changed me too. I hate what we have had to endure. It pains me til this day. It always will. I will never forget it. We need better treatments. We need to find a way to fund more research. We need to find a better solution. We need a quicker, less harmful cure.

On top of the chemotherapy, she has had a significant amount of antibiotics before and after surgery. As a result she cannot absorb the nutrition that goes through her body. This is a common side effect of all this treatment. This is one of the reasons many children on treatment start to look thin. This also happens when mucositis rears it’s ugly head during cycles of chemotherapy. Luckily Daya maintained her weight for several months. She didn’t put on weight but she didn’t lose too much either. Daya has had a whole combination of nutritional efforts over the last three weeks. Progress has been very slow.

We have had to revise our treatment plan again. Treatment has never been a linear path for us. We are moving on to our next ‘adjusted step’ of the treatment plan; Immunotherapy. More on this later. Neuroblastoma is a very aggressive cancer. You can’t sit back and relax for a moment. As battered as her little body is right now we need to push on. More on this later…

We have been living here almost a month.

We miss home. I get about 3 hours sleep a night. Sometimes 5. Daya sleeps a lot more. Anaya and JJ are missing us badly. JJ searches around the house in the mornings calling out Daya’s name.

Daya has had enough. She’s down. She’s not walking much. She has had a bit of a ‘flicky’ leg which is a side effect of one of the chemotherapy chemicals. She’s also has some tenderness and weakness where her ribs and muscles were cut through during surgery. She doesn’t want to be here sitting in her cage (cot) for hours on end. She’s struggling. I’m convinced prisoners get out more and have more to do.

We pass the time. We play. We cuddle. We cuddle some more. Our nurses cheer us up. We switch beds with each other. I get into her cot. We watch rubbish on the iPad. We face time Anaya.

In good news, our wonderful dietician (who prescribes the TPN) and our nurses made a plan to try and get us out for a few hours. They have reduced the time we spend hooked up to machines. That’s love.

We have been home for around 4 hours each day for the last few days. It’s nice to have them altogether. It’s a bit chaotic and very busy. So far it’s been nice to be out.

I booked our Ocado Christmas shopping date in ….drum roll please….October for December 24th. That’s how efficient I am. Yesterday I cancelled all the big Christmas items. There is either no one to cook it or no one to really eat it. A few presents under the tree for Anaya and the twins is all we need to pass through this time. I ticked that box too thanks to Amazon prime. Given recent events Christmas is cancelled.

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