Trains and boats

Strangers rushin’ past

Just tryna get home

But you were the only

Safehaven that I’ve known

Hits me at full speed

Feel like I can’t breathe

And nobody knows

This pain inside me

My world is crumbling

I should never have…

Freya Ridings

We are still on the train through the valley.

Too much has happened. I’ve repeated myself many times this week in hospital. I haven’t been able to find the right words to update anyone. A combination of life and time have rendered me incapable of keeping up with everything or being able to stop for a moment to truly think.

It has been a difficult week and has shaken my confidence. I’ve been angry, quiet and scared. It has been amongst the toughest weeks since our return from surgery. We are drained.

We are currently living at GOSH. There are a lot of tests and scan for her to go through. Our team have said we are still in the early days of recovery and have been reassuring. Batten down the hatches. The storm is here…

She’s lost a lot of weight.

Saturday morning, Anaya came into my bed for a cuddle at 6am.

Anaya: mummy when is Daya coming home?

Me: not for a while…

Anaya: Mummy wouldn’t it be good if they could just fix cancer in 24 hours? So if Daya got sick on Friday she could be home by Saturday or Sunday…

Me: ……yes……sadly it’s not that easy right now but this won’t last forever.

Cancer affects everyone.

Silently, I debated if I should make her a promise right there and then that I will do my best to help shorten treatment time by raising funds to support research into Neuroblastoma. I’ll do my best to save more little lives and reduce the side effects of treatment.

I couldn’t get the words out. I can carry the promise. I couldn’t carry the emotions. I’d cry if I said anymore.

All that I could really say to myself was ‘don’t leave me Daya. Don’t leave me. Don’t leave us all like this’.

I’m happy to have you home

The wonderful Wendy was the first person to see us arrive when we came back from NY. She saw us from her window, before Big Sister and Jasmine came to the door. She said I was grinning like a Cheshire Cat. She hadn’t seen me smile like that in a long time.

The next morning I saw her in person.

Wendy: I’m so happy to have you home.

I hugged her.

Me: it’s great to be home.

I smiled back, nodding in silence. It was great to see her too.

“Keep your heart strong…

Now I saw a friend of mine, the other day

And he told me that my eyes were gleamin’

Oh I said I’d been away, and he knew

Oh he knew the depths I was meanin’

And it felt so good to see his face

All the comfort invested in my soul

Oh to feel the warmth, of his smile

When he said, ‘I’m happy to have you home.'”

Ben Howard, Keep Your Head Up

Normality: Keep them smiling

Last weekend, as exhausted as we were and are, we tried hard to keep things fun and ticking over for the kids. Daya even perked up for about ten minutes and asked to get out of the pram and into the swing.

This weekend was the opposite. Following Daya’s nil by mouth period and erratic feeding throughout the night it was impossible to venture out. We have been getting between 3-4 hours sleep each night this week. We have been taking it in turns. We have been dragging ourselves through the hours of the day. Well, I have. He’s more robust. I haven’t had the energy to actively have fun with my kids all the time. I’m just trying to get through the day.

In some ways, I’ve found it very difficult to adjust to being back. I haven’t fully worked out why – it feels different this time. Maybe, it’s because I’ve come through a huge storm only to realise that the old storm didn’t actually go anywhere. It was just waiting for me to come out the other side. I’m tired of storms.

Cancer treatment is not a linear path. On paper it is. In practise it is swings, slides, roundabout..and emergencies, sedations, operations, scans etc.

I don’t want to drive down to the hospital and be stuck in traffic for half an hour in the same place every time. The same place everyone tries to shamelessly cut-in in front of you by using the wrong lane. I don’t want to struggle to look for parking in that place where all the roads are closed due to roadworks. I don’t want to walk the familiar corridors and pay attention to important conversations. I don’t want to sit in an isolation room passing time waiting for something to happen. I don’t want to go to the supermarket and make choices about cereals or milks. I’m too tired. I’m also just mentally tired of all this stuff and keeping on top of everything.

Daya had a reaction to the chemicals used during Friday’s procedure. Her jaw, neck and chest are red. She’s been fatigued and clingy. She’s been carried downstairs a few times for a change of scene. She hasn’t wanted to stay long. She went out briefly on Saturday for ten minutes. We went to say hello to the squirrels.

Everyone is tired. I’ll be back at the hospital three times this coming week. She will be nil-by -mouth again. Lots of crying and begging for milk. Her coat is too big for her. Some of her 12-18 month tops are too big for her. When I come back from the hospital the other two will be demanding my attention. However the needs of Daya have to outweigh the other two. It’s hard not having enough time to spend with all three of them. I try and compartmentalise the time and provide snippets of concentrated attention to each child.

It’s been a tiring weekend for us. It’s been a tiring few years. It is hard when you have a sick, clingy child for 48 hours. This has been the case for over a year. But we are all still alive and still here. That’s the main thing.

Line Insertion

In the car…

Oceans apart day after day

And I slowly go insane

I hear your voice on the line

But it doesn’t stop the pain

Richard Marx, Right here waiting for you

Me: Oh I love this song…

Him: It’s good it wasn’t playing when you were out in NY…

Me: changes to Kiss FM

It’s not over for us. Here we go again.

We drove down to GOSH with a nil-by-mouth Daya today. She’s lost a lot of weight since high-dose. After high dose she had surgery and a line infection. Everything has had an impact. Project Fatten up Daya is in full flow.

This is Daya last year. She had completed her first round of chemotherapy and had terrible nausea and mucositis. She had returned home from her local hospital.

She cried a lot today. She’s weak and fatigued. She gave up fighting. I was sad to see that. She slept. She looked passively out the window for some time when she woke up. Quietly contemplating life. It was not fun. She’s older now. She knows more about what is going on.

She waited patiently to go into theatre.

No other pictures for today. She went down into theatre. They inserted the new Hickman Line. She was too tired. She didn’t cry afterwards. There was no room in recovery so we got to see the operating room. We waited for a porter. We went back up stairs and waited some more, doing observations, before we could leave. We were the last to leave today.

We got to see our Nurse Specialist which is always a good thing. We got to see some of our old nurses and our favourite play worker for a brief moment. Jasmine was home all day.

It’s been a long day for all of us.

And on the way home we reverted to Smooth FM for some calm Friday night vibes whilst she slept on the journey home.

Spend all your time waiting

For that second chance

For a break that would make it okay

There’s always some reason

To feel not good enough

And it’s hard, at the end of the day

Sarah McLachlan, Angel

Mr C – The Dietician Departs

Our paths crossed with the most wonderful dietician.

The look of disbelief and sadness on my mum’s face said it all…the dietician is leaving.

And this is what my mum said when JJ and Booboo’s dietician left our house the last time he was here.

‘The next time he comes, let me know in advance…I will feed him. Who knows if he gets a good meal…he’s so busy looking after everyone else…I will feed him. He can sit down and eat before he goes….’

We love him. Not only is he an all round decent guy, he’s a lovely human being. He is also very much ‘normal’ and focussed on what works for the child. He’s relaxed, well informed and intelligent. There are no BS hard-line policy guidelines of 2017 or new nonsense mandates in 2018.

The approach is more along the lines of ‘I look at the child…is she healthy and happy…is she growing…I’m happy’.

Oh, this is why the world loves you.

Some ‘professionals’ that you may meet will coast along or tick their boxes, others create a ‘them & us’ culture and some are great. The list of character types could be longer but that’s not the focus today.

Mr C came into our lives to help fatten up JJ for her cochlear implant surgery. The sooner you get those CIs into the deaf babies the better. Children have a communication/speech window which starts to close at around 2.5-3 years. Mr C helped us fatten up JJ in quick time. He listened; and I always talk fast as I fear their time is precious and limited. He did things super quick. He always communicated with care and careful consideration. It was concise, relaxed and effective. He fitted in and complemented our lives and those of the children. He wasn’t a condescending know-it-all but a careful and considerate soul. We will miss him and we wouldn’t have achieved things as quickly without him.

He says he didn’t do much but he’s one person who has played a part in our journey. We wouldn’t be here without his input. Jasmine is pure muscle. She’s a chunk now. Her food used to be covered in olive oil, she had her fattening milk and we collectively worked hard to ‘chub her up’. She had little fatty cheeks at one point and ‘nice chunky thighs’. He has also used his specialist knowledge to help with the damage to Daya’s intestinal tract post chemotherapy.

It’s sad to have one of our team leaving us. He’s not the first but he’s certainly been part of the family for a long time. He’s moving on to better things further away. We won’t ever see him again. He is someone we will always value.

The night

Getting ready for the party tonight…

And this was the story book tonight….

Yep that’s mummy !

During high-dose, an anonymous gift-er sent us a national geographic torch…I love it… we have been using it tonight….little Anaya joined us for an impromptu lesson on space and science…It has little discs that you can turn for a slide show.