Muddy Puddles

We are back home. This time we hope that we have no seizures or set-backs.

We are home. That’s the good news. It’s tough at home but there’s also no place like home.

Daya’s not so sure of Anaya’s new close relationship with her Tanya Rabbit.

Truth be told, Daya is tired and skinny and finds it too stimulating at home. She’s used to the peace, isolation and silence of a hospital room.

She’s adjusting as are the other two.

Jasmine looks after her. She loves her endlessly. She will bring her water and tell her to ‘dink!dink it’ (drink).

She will share her grapes and try and feed her….which is big as Jasmine loves her food.

Luckily we came home from our local hospital quickly. But had to go back to GOSH to do some tests.

Her original play lady was on hand. I noticed that Daya didn’t cry once with her, yet with me, when she did the same tests, she screamed and cried every time. Daya is happy with her.

Below you can see one of our nurses helping Daya and Daddy on their secret mission to leave GOSH and surprise us at home. Even the most respectable nurse has a little bit of naughty in her.

Daya’s hair reminds me a little bit of the original Incredible Hulk, Lou Ferrigno, no?

Which kid doesn’t love a parachute? I know these two do and given that they don’t attend an array of music classes having the parachute at home was super exciting. Jasmine did her best impression of Mowgli from the jungle book.

I’ve been awake all night so far. Last night she was irritable and woke me up 7 times to change her nappy. The night before we were up most of the night again. And the night before that too. I’m beyond shattered. My whole body hurts. Anaya popped in last night as well because it was just ‘too hot, mummy’. I can hear the thunder rolling as I type this. I can also hear all about ‘george’s dinosaur’ and ‘meow meow’ and ‘change me. Change my nappy. Done weewee’ and ‘want something dink’.

In the morning on minimal sleep I’ll have to look after the other two as well. Two bad nights in a row messes you up.

In more news, Jasmine has been channeling Frida Khalo. She’s also been to see our favourite doctor. I got to have the special love today until I had to FaceTime daddy to keep Jasmine entertained. He’s had a haircut by the way, it looks good. The doctor, not daddy… I might start surreptitiously updating you on things to do with both of them… Daddy has had a haircut and he accidentally punched his trainer in the face during a sparing session. But back to our Doctor, was great to see him. I was too tired I couldn’t talk at my usual rapid pace. It was strange being there with Jasmine. I was able to switch off a bit where other parents would be on high alert. Not as many worries…and then she was back home with her Daddy (favourite parent (but they have spent more time together).

The kids are ours. The dogs aren’t.

I had to stop typing this as Daya became unwell.

We have rushed to our local.

***

And we are now living at our local hospital with our wonderful team. As much as no one likes to go to the hospital it’s awesome when Ruthie and Claire are there. Daya does everything for Ruth without any tears. They had a chat, did some observations on little Daddy and a dressing change. Even when she’s not well, Daya smiles and engages with Ruth.

She did a whole dressing change for her without any intervention from Mummy. Daya loves her. Ruth makes her feel safe. What more could a parent ever want for their child…

Daya has had a lot of back and forth between hospitals and I have lost track. This time I went home and stayed with the other two little bears. Daddy and Daya had some ‘we’ time (she coloured in and he did his work) and we went to the park.

We went to look for Muddy Puddles. Daya hasn’t ever jumped in a puddle but she does love Peppa Pig and talks about Muddddddyyyy Pudddleeesss.

Just one little walk in the rain with these two is all I have had this year. No holidays, No Eurodisney, no zoos or aquariums, no museums or meals out…it was time well spent. Lots of singing and dancing in the rain from Jasmine, water filled boots from Anaya and a warm fuzzy feeling in my soul.

J: Mummy!Mummy! Mummy duck. Naya duck. Jammin duck. Daya duck. Heheheh

A: Mummy my boots are all wet inside…

P: Anaya you haven’t truly lived if your boots haven’t been half-filled with water at some point in your life! Go for it again.

When it rains, look for rainbows….or better still come alive, fill your boots and go jump in muddy puddles.

Grief: the loss of a child

This time last year you donated a huge amount of time, effort and money (a huge amount of money) to help us give Daya the best chance of survival. In case you haven’t fully comprehended the enormity of what you were part of then please read the below.

You did something to try and ensure that I would never have to feel the depth of despair that comes with losing a child. It might not have been your intention but that’s what you were doing. You had an opportunity to walk away, to pretend you didn’t know about her or to step up for us. Our lives are shit. We are trudging slowly through a shitty hell. You stepped up and into our world and you helped.

So that you can comprehend what you’ve been a part of I’d like you to read the text below from my dear friend and awesome mother who lost her son in April. I loved this little kid. He didn’t give a shit about cancer; not any of it. He was always zipping around on his scooter and he made me feel like we could kick this and that one day I too would have his approach to all of this. I rode a scooter the other day in our ward. All I could think about was him. I wished that his mum was riding down the corridors with me. I laughed and smiled and went fast. Daya was asleep. It was fun. I felt alive for a little bit. I felt like he was still here…

She wrote this beautifully honest and moving piece that captures the enormity of the situation that many parents have to face.

I want you to read this. It has been reproduced her with her permission.

Two months. Two whole months apart.

I’ve been struggling. That’s no secret. I am struggling. Some days I just sink, some days I can just about tread water until the day is over, but overall I’m drowning. I wish the hours of each day away, I cannot wait for them to be over, desperate to escape in some sleep, no matter how little that may be. And then morning arrives. My eyes open, I have roughly two seconds before my brain connects, and there it is. That wave. Crashing on top of me, and I’m back to swimming for my life, gasping for air, and desperately trying to block out those words being screamed in my head: ‘He’s gone. My baby has gone’. And each day is becoming more difficult than the last, because each new day brings a little bit more realisation – he’s really never coming back. Ever. And I cannot put into words how much that hurts.

In an attempt to help keep me afloat, its been suggested I write down my feelings. An honest account of my grief. Maybe, in time, it will be something to look back on to see how I’ve grown with it, learnt how to ride the waves without sinking. Maybe it will help. Maybe it won’t. Maybe Facebook isn’t the most appropriate outlet for this, but I’ve shared Luke’s journey throughout, and this is still very much our journey.

My son having cancer has damaged me. My son dying has broken me. The chemotherapy, radiotherapy, radioimmunotherapy, bone marrow transplants, every single toxic chapter of treatment brought such sadness, yet also such hope. Hope that my boy was going to live his dreams, hope that kept us going year after year. But then I watched him take his last breath, his mum, completely powerless against this monster of a disease. All of the hope died, he died, and part of me did too.

When you’re grieving, you learn very quickly that the world doesn’t stop spinning. But mine has. As the world around me carries on making new memories, I will forever live mine in the past. I don’t want new memories without Luke, that’s not how it was meant to be. In 5 years, 5 months and 6 days, I never spent a day away from him. I never wanted to. Not a single one. And now I have no choice, and my heart simply cannot accept that. I will admit I have become withdrawn from the world, but I’m not a recluse – I get up every day, I go on the school run, I walk, I may pop to a shop, I do my best to try and create some normality for Lauren – but I’m in survival mode. I’ve stepped back, and chances are if you’ve invited me to do something lovely, I’ve declined. Not to be rude, not because I don’t like your company, but simply because I can’t. I’m drowning so much that I have no strength for anything else. There are days where I question if I’m living or just existing, times when seeing three instead of four makes me want to run away and hide, and moments where the pain is so crippling it takes all I have just to simply breathe. And it’s ok for me to feel like this, because it’s my grief. You’ve never experienced a grief like mine, because it’s exactly that – mine. As yours will be yours.

The outside world has become deafening to me – the noise, the busyness, the talk of normal life that everyone seems to have but me. It’s unrecognisable, I feel so out of place in it, it feels so empty without my boy. Walking has been my safe place this past month, it’s becoming my new saviour, my way to escape this unknown territory. Rain or shine, I like to feel the warmth of the sun on my face, the raindrops hit my skin. They remind me, as much as it hurts, I am still alive, and I have to carry on. I will carry on. There is no question on that. For Lauren, my beautiful Lauren, my energetic ray of sunshine who doesn’t deserve a single more day of sadness in her life. But it’s hard. So very hard. Half of me is here and half of me has gone.

I came across this quote the other day and thought it described grief so beautifully:

‘Grief, I’ve learned, is really just love. It’s all the love you want to give but cannot. All of that unspent love gathers up in the corners of your eyes, the lump in your throat, and in that hollow part of your chest. Grief is just love with no place to go’

I know if my love could have cured Luke he would have lived forever. I have no doubt about that. He would have outlived us all. But the world works in ways I will never understand, and I now have to find a way to live on without him. I honestly don’t know how I am going to do it. So please, tell me if you saw something and it reminded you of him, I love to know he’s been dancing about in your head. I love to hear you mention his name. It helps keep him alive. Talking about him won’t upset me, he is at the forefront of my mind every second of the day. He is everything I want to talk about. I just wish he was here to talk to.

So here we are. Two months without my beautiful boy. It feels like a lifetime already, and yet there’s still forever to go. They say you don’t know what you have until it’s gone. That’s wrong. I knew what I had, I knew for every one of those 5 years, 5 months and 6 days what I had, that’s what makes this so hard. It was everything. Absolutely everything, and it will never be the same again.’

Dear Nurse

So much you have given love
That I would give you back
Again and again – Dave Matthews Band

Dear Nurse

You are so much more than ‘just a nurse’. In these circumstances, you’re the parent I can’t be to my child.

You’re the one that brings in the chemotherapy, pain relief and knows her plan. You know the side effects already. You’ve seen others die before us. Yet you fall in love with her. You keep your heart open and your mind strong.

You see the pain in my heart but you don’t point it out. You see us fighting back tears and you step in for a hug. You listen carefully because you know we know them best. You listen carefully because you care.

It’s not a shift or a job nor is it work. It’s a dedication. 12 intense hours, plus travel time. Working days then shifting to nights.

Watching the children that you relentlessly care for pass away…this is one of the most difficult jobs in the world and you do it with commitment and kindness. You also watch them come back with hair on their heads and a smile on their face.

I love you for your quick thinking and your calm disposition. I love you for your open heart and playfulness. I love you because you are selfless and kind and because you want to do your best. You are excellent with children.

You watch over her when I’m asleep. You watch over me too. You watch over me when I am quiet and you let me be. You sing with us when we are loud. You paint and colour-in and dish out stickers. You go down the slide or you play the piano. You dance to baby shark or Drake because she tells you to join in.

You make her laugh. You stroke her hair during the scans where she needs to stay still for long periods. You hold her hand and you bring extra wipes for her to play with. You take her to the roof garden and let her feel the breeze on her face. You get her home for Christmas. You let her out for walks. You get watermelons ordered up just for her. You tickle her toes or hold the iPad when she’s having a reluctant bath. You’re effective. You get annoyed when something goes wrong or someone elsewhere isn’t doing their best for her. You help me change the sheets and you hold the sick bowls with me.

You’re more than ‘just a nurse’.

You sit on the floor and cuddle her close whilst you do her observations. You let her push the buttons on the machines. You change her dressing carefully because you care, and because you care you acknowledge she’s there. You play hide and seek in a small room for 40 minutes without tiring because you love her.

You’ve looked after her in a way that screams love instead of ‘its a job’.

You come to see her even when she’s not your patient or on your ward. You give her time. You talk to her and not just us. You make her giggle. You give her medications and make it fun.

Without telling us, you tell everyone not to come in because you counted that we only got two hours sleep.

You watch her carefully without her knowing. You talk to your team outside and make the changes you think she needs to make her comfortable or feel better.

You hold it together when a child has died and you look after the others on your shift without them ever knowing what you have to deal with outside the room.

You communicate clearly and provide a plan. You are honest and open. You don’t talk down to or over tired parents. You think before you speak. You fix things. We make one call to you and everything gets done. I’ve lost count of the number of times you’ve saved her life.

You are careful with my heart and you are kind to my child. I know you love her and I know you’re committed to getting every child and every parent through this journey.

You aren’t just a nurse. You’re our nurse. You’re awesome.

We love you.

Pam

Daya’s Mum

When I count my blessings, I count you twice. – An Irish saying.

A poem for Daya

This touched my soul today. A beautiful, funny mum friend on the oncology ward sent this to me. It’s taken in the Brunswick Centre. It’s the place we go to when we are allowed out.

And then she, a force of nature, found the poet. And then he found us. I literally have no idea how to use Twitter (it an Agnes thing)!

This made me smile. I needed to smile. And the words are powerful x

Six

This week Anaya turned six. We didn’t have a big kiddie class party this year. It didn’t seem right. We did a nice small family thing at home.

This situation has been going on now for half of her life. For three years this is all she has known. Makes me sad. Daya’s been fighting cancer for nearly 2/3s of her life.

After two weeks and two weekends of being in hospital I had nearly almost had enough. I was glad to switch with Daddy. He got to celebrate Anaya’s birthday last year so it was my turn this time. We take it in turns…like divorced parents…because that’s what these circumstances (cancer, work and special needs kids) does to you. It fractures your family, spreads you thinly and you prioritise and manage life around the kids and work.

Daya had fun with ‘The Jackie’ and her fixer and favourite nurses arranged a jail break so she could make it home for her sister’s birthday. She even ate a teaspoon of cake.

When I went home I walked around the garden amongst all the ‘plastic toys’ we have strewn around the garden. Recently I’ve become very aware of how easily we can lose young kids to cancer. As I walked around I thought…’this must be what it’s like for her (my friend) now that he’s not here…’. I started crying.

I found it very difficult to be away from Daya. I couldn’t hear her voice at home, instead, I could just hear the other two playing and bickering. It felt awful. When she surprised us at 4:30pm I hugged her and cried.

I cried happy tears.

Our fixer and nurses sorted everything out. Daddy rolled in with my baby girl. We had a good birthday this year. Just family. Nice and chilled.

We had a few nights at home and then Daya returned to hospital on Friday. She was nil by mouth. Her sugars plummeted. This was a problem. She also had some impromptu Bone Marrow Aspirates. Her skin is marked with cuts and scars from incisions, cannulas and operations.

She had a PICC put in.

Now………..:it bled which it shouldn’t do. So we were back at our local on Saturday night. Back home and asleep by 1:30am. I was awake at 5:30am. Completely shattered for the following day.

Luckily for Daya she got some cuddles in with Ruthie who was working the night shift. Ruthie is one of her favourite nurses. She sorted us out quickly and Daya was back home again. But the next day her line was still bleeding and her blood pressure was high so we had to go back into our local in a rush. After several hours there, we were ok to return home. Then from 1am to 6am Daya was awake which meant I was awake. Then we went to Gosh today completely exhausted….more on this week later.

On the way down to GOSH Daya was completely silent. She didn’t answer any of my questions or ague about anything. She just looked depressed. Before we got in the car she said softly, ‘ I don’t want to go to the hospital mummy’. she was silent all the way down. She didn’t talk to me at all. Things have taken their toll…they did a long time ago. Watching her depressed state was painful.

She was happier, although exhausted, on the way home.

It has been a relentless and exhausting few days. Normal for us but annoying as the cumulative affects of fatigue are taking their toll.

Thank you, always

I’m writing this from Giraffe ward. Anu and I swapped earlier this week and he surprised me by bringing Daya home on Anaya’s birthday. We are back in to have a PICC line inserted and to have her pelvis punctured for bone marrow aspirates. She’s under a general anaesthetic.

This time last year we were undertaking high-dose. I say ‘we’ because all of this is a family effort. However it is Daya who has suffered the most. This time last year our nurses on Giraffe Ward carried us through the bad moments. You can check the blog for this time last year to see what we had to go through and what she looked like. You also carried us through. We opened cards and put them on the walls. We occupied our time with things to do until she couldn’t do anymore. She had a fever for two and a half weeks straight. I didn’t leave her side. The things I have seen bring me to tears… so I don’t talk about them. Watching your child suffer whilst you can do nothing about it is one of the most awful things.

Daya lost her hair again. Daya’s hair suddenly fell out two days into High Dose. She didn’t make a sound for weeks. It was awful. To this day, I still say that the child I took into that ward never came out the same. She broke. We lost a part of her during that process.

That’s how cancer destroys you.

And at around that time we found out that her tumour was inoperable.

Humanity touched our lives in the most remarkable way during those months.

To have to reach out to you for help wasn’t a decision we made lightly. In fact, it was something we put off for a long time.

I had stumbled across the name LaQuaglia on a few neuroblastoma forums that I had signed up to. I had never really paid proper attention to these. I was more interested in getting a feel for the conversation and questions people were engaged in. I didn’t need to know much more – thats also because we have a great team at GOSH who always have a plan. For a long time I thought LaQuaglia was an institution in the USA somewhere; parents would advise each other in brief statements; ‘you need to get your kid to LaQuaglia’ or ‘I’d recommend LaQuaglia in New York. It worked for us’.

Eventually I worked out that he was a surgeon; an excellent surgeon with a lot of experience in getting out neuroblastoma. In fact, he spends a lot of time teaching other surgeons from great institutions around the world.

After extensive chats with our GOSH medical team, a call to Solving Kids Cancer (SKC) and some deep due diligence on our surgeon; we decided to leave no stone unturned. We knew we needed to do everything that was feasible and safe to save our child. The risk of leaving in such a large tumour was too high. SKC helped us to engage with our chosen surgeon and we did our due diligence again and asked lots of questions. Our GOSH team turned things round with record speed, they supported us throughout and after the operation I called our consultant and ‘fixer’ first.

And then we proceeded as quickly as we could …Paperwork, questions, conference calls, meetings, decisions….and tears and some fears and more tears and steely postures.

Going public wasn’t something that was easy for us.

1. We are private people and 2. on some level it hit me hard and hit home to me that I personally couldn’t do everything possible to save my daughter. I needed more help and that made me feel incapable, ashamed, inadequate and useless.

I was effectively begging the world to help me and I had no idea how that would be received. It made me feel vulnerable.

And then there was you….

From the child with the piggy bank to the corporate lawyers….

From the bakers to the bankers and the barristers…

The corporate philanthropists to the children running superhero races…

The mums making banners and the dads running marathons..

From Team Heathrow to Team Snowdon…

The school mums climbing mountains and the men racing trains…

From nurses to nannies…

Recruiters and disco ravers…

Our neighbours next door and those thousands of miles away in far off lands…

The swimmers and secretaries…

The triathletes and trainee solicitors…

The soldiers and the singers…

University staff to police officers…

Journalists and janitors…

New York nurses and London nurses

Dad’s shaving heads to famous footballers…

From our local shopkeepers to old school friends…

From magicians, medical teams, money collectors and the military.

From aunties to actors to artists…

And Anonymous.

And everyone who I haven’t specified in this list, please forgive me, you are not forgotten. We had donations from thousands of people.

The list is long and vast.. But you all came together for one little girl. All ages, races, ethnicities, religious beliefs, countries far and wide….she brought you all together. When I was hurting and falling apart inside, this time last year on Giraffe ward…

You all came together for one little girl. For my little girl and to help other children with neuroblastoma.

To this day, when I catch myself thinking of you all, which I do often, and the support you have given us, I get a lump in my throat and I feel overcome with emotion. You make me cry happy tears.

I’ll always be incredibly thankful for everything, for every donation, for every anonymous message of support, for the invisible supporting net that stopped us from falling to the ground.

You’ve helped to save a little girl’s life and to fund more research into neuroblastoma specifically.

You have helped to save my daughter’s life. Along the way she has become your daughter too.

I could never have imagined any of this.

For you, I will always be beyond grateful.

Everything, everything you have done has never been taken for granted and never will be.

Thank you for showing up when it mattered. Thank you for your kindness.

Thank you for an unbelievable outpouring of support. Thank you for ensuring she is still here. Thank you for making me feel supported and showing us so much love.

Thank you for being a part of our journey.

This is and has always been glued together and underpinned by love.

This. All of this. This is real love.

Peppa and painting

I think it would be such a good idea if Cbeebies took over Wimbledon for a match between Duggee and Peppa Pig…something fun for the kids to watch….

Daya has had a good day. We are improving. I haven’t been home for two weeks and two weekends. Today was a quiet day.

Today she was busy. We had a bad night. Two hours sleep for me. I feel asleep again in the morning. I later found out that our night nurse told the morning nurse to not come in at all…!

Daya eventually woke up. I realise I’ve become that parent that opens the blinds to wake their teenager. Here is my two year old refusing to wake up.

Daya nibbled on some toast. Our Nurse can move her face really fast like a little mouse. Daya loves it.

Daya has also been very creative and has worked diligently on her little projects. She has also tried a good selection of food.

We have also been watching the Wimbledon men’s final. I’ve been doing a tonne of admin for the girls from my phone. We FaceTimed Jasmine and Anaya. Daya is into Peppa Pig right now so he’s repeating a lot of her words. So far the day has passed quietly. She’s finally improving from the infection. I hope to return home soon.