One hair at a time

So time for an update…

This week has been good in the world of oncology.

Daya is putting on weight via TPN. She is chubbing up. She doesn’t actually eat anything. I had no idea some of the stuff they put into her body could actually burn her skin tissue if they made contact. Her TPN goes directly into her blood.

She also has a thick head of hair. The nurses keep stroking her head. She’s like their pet cat. She’s changed a lot since chemotherapy and surgery.

Daya got to spend some time with our play lady who has been with us since the beginning; back when Daya couldn’t even walk.

Daya asks for her all day after she leaves us.

Daya was bribed with a monkey mask this week. She has developed some nice chubby cheeks.

We, or maybe just me by myself, have been messing around all week. I roped the nurses into the room for a quick dance around to Baby Shark. I put my big bum down on the kid’s ride on tractor and took it for a spin around the ward and then I took our nurse around the as well – she sat in the trailer at the back of the tractor. I investigated the weight capacity of a kids micro scooter. We flicked play dough at each other. We won a competition on the radio. We messed around with jelly, we sang loudly, I made the nurses laugh hysterically til they cried, I danced around the nurses station day and night, I set up a mini office outside our room for ‘private consultations’ on important things such as where to find parking and what time the park closes, having answered queries from the nurses and parents as their new highly experienced self-appointed ‘Parent Liaison Officer’, I resumed formal duties as the mother of Daya. We cuddled and got through the nights. All in all it was a good week with dancing, friendly banter and good care. It helps that our nurses are also very funny and kiddie focussed. It makes things easier for Daya.

It’s been a tiring week.

Separately, I would like to talk to someone about parental abuse…I was just trying to put her leggings on and she snapped me like a crab. A few more years and these kids will be having plenty of jokes at my expense. I will be truly out-manoeuvred.

She was pleased with herself.

Daya’s been tired. She’s had a few procedures and been under General Anaesthetic this week. She’s picked up a minor viral infection. We have been going out to the park. She doesn’t have much energy but we are trying to build it up. She loves the swings and the sandpit.

I spent a restful weekend at home with the kids; doing nothing in particular. We rested and snuggled. Jasmine is saying words and is a joyful little character. Anaya is growing into a little independent politician…hmmm. I miss all this.

It’s been nice to sleep in my own bed. I’ve needed the rest.

Happy Colours

She said: the only way to beat death is life

He said: there’s a word for it……hope.

(Medical director of New Amsterdam Hospital talking to his Oncologist)

Nearly four months. That’s how long we have been living in hospital since Daya spiked a temperature for an infection.

Four months of living in a heavily air conditioned box. We have been out-out a few times. The air and light are a shock to the system when you first step out of the room and then again outside the building.

“I don’t know how you do it”. I don’t know how I do it.

We do it because we have to. You get scared sometimes, especially when kids are dying in the rooms next to you, and you have to remind yourself to not overthink.

Her body is now tired out and worn down by everything it has been through since the summer of 2017.

It’s lonely inside our closed room. It’s socially silent. It’s mentally un-stimulating. (That’s a made up word). It’s emotionally draining. It’s physically depleting.

This is what being in prison must be like, without the nice nursing staff.

You watch the clock tick by and try your best everyday. We are confined with each other. My job is to keep her well and stimulated all day and to comfort her at night. Sleep is definitely lacking.

The room is never dark and she’s often unsettled. Machines beep during the night. I buzz for the nurse. Sometimes she vomits, sometimes she cries.

A friend said, ‘it’s like having a new born all over again’, well dear friends it’s been like this since the start, it’s like having a newborn all the time. I am permanently exhausted.

They say a change is as good as a rest. They are wrong. Sometimes Daddy and I switch on the weekends. It’s then full on with the other two but with different needs. And now we have half term…!

But it’s a rest in my own bed and I get to catch up with the kids and sleep 5-7 hours straight. I miss the conversations.

I handed Anaya a little piece of note paper and four minutes later….

A: Look mummy, I drew a portrait of you.

Me: (holy moly! what the heck is that). Oh…great what is that Anaya?

A: Mummy! It’s you in the style of Pablo Picasso!

Me: (oh my god my kids an art genius. Go child. Paint now and make us rich). Where did you learn about his style?

Anaya: Mrs C (her class teacher (name shortened for privacy)) told us about him and he used to paint faces and shapes differently like this. He would flip things around and he had happy colours and sad colours depending on what phase he was in during his life!

Me: Gosh Anaya. You’ve learnt a lot. What phases did he have? Shall I tell you about Turner and Suerat …?

Anaya: hmmm let’s talk about when you’re going to get me some more Lego Friends…

The next morning…

Me: Let’s go to the toy shop and get something we can paint in Happy Colours….

Anaya: see these are happy colours and those are his sad colours

I wish Daya had been in these pictures too.

Playtime

A little update on Daya in pictures. We have been trying to build up her strength in between rounds of immunotherapy.

Peppa pig came to visit us. We sang some songs. Peppa had some great dance moves. I loved her! Daya was thrilled too.

We also had a friendly stormtrooper with some scary friends…this is Lauren, who is not scary, with Daya. She’s one of our play ladies.

We went out for an hour. She loves the swings and the sandpit play area.

Daya caught up on current affairs and played hide and seek with Lauren our playlady. There aren’t many places to hide when you’re living in one room.

Daya’s first little bunches.

Nurse: Daya do you have a sister?

Daya: Yeh

Nurse: what’s her name?

Daya: Jammin

Nurse: oh Daya I love you.

We are still watching a lot of Zog and snuggling whilst things go on.

Happy Love Day

If I gave you my love, would you know it?

Love is Daya wrapping her arms around me and snuggling under my neck.

Love is Anaya dancing with glee in the hallway when I come home late at night after days away.

It is Tom giving Daya a fist bump.

It is Jasmine smiling back at me and giving me a cheeky kiss on the cheek.

It is my friend dropping Anaya home.

Love is Jasmine calling out Daya’s name everyday even when she’s not here.

Love is Jasmine running to Nani and grabbing her leg and not letting go. Or climbing on to the sofa and cuddling under the blanket in her lap.

It is Deborah watching Jasmine go through her bag of toys. It’s the colouring pens and pad she’s bought just for her.

Love is right there in Uncle Tom’s Hey Duggee stickers. He went to buy them especially so he could play with Daya. Raj with his Duplo because ‘she likes building things’. And Aunty Gaby who beavered away quietly in the background and Nina’s sparkly cakes….and all the gifts that were received and given were because of acts of love.

Love is the look on the doctor’s face who marvels at Jasmine’s progress.

Richard’s tight hugs are love because words aren’t his thing in bad situations like this.

Love is the nurse that creeps in gently at night and gives your daughter her meds whilst she’s asleep in your arms.

It is the doctor that says I’m going to get to the bottom of this and checks in every day to listen and then carefully think.

It is the nurse who makes your bed whilst you’re out and the playworker who sets up a Christmas tree.

It is the friend that says I’m coming to see you or I’ve sent you a card.

The friend that says ‘you’ve got this’ or ‘I’m thinking of you’.

It is the nurse that worked a whole extra shift and donated it to charity and loves to sit with you during her lunch times just to be there so you’re not alone.

Love is the lady that monitors his coffee intake whilst supplying an exceptional amount of chocolate biscuits.

The medical team that try and make every decision the right decision.

It is the Teacher of the Deaf that listens and guides you when you’re broken and scared.

It is the social workers that beaver away everyday in the background to support families dealing with end-of-life or difficult situations.

It’s the play team who keep smiling all day and keep their energy up and and focus on developing new things to do.

It’s the consultant who holds himself together for you when he’s just given someone else awful news. Love is the dedication he shows by keeping on top of every detail.

Love is in the arms of the mother that smiles at you and gives you a hug when you’re both crying; the same mother who lost her child in the room your child is now playing in.

Love is John who always finds something supportive to say and who’s words have been my lighthouse and my anchor.

Love is the the friend who says I’m going to do everything I can to get this kid better, to get this kid to New York, to get this kid home.

Love is the nurse who invests in your child; who spends time playing with your child and making her feel at ease.

Love is the nurse who dances in front of your window when you’re in isolation.

Love is little cards that come through your door. The cards that someone has searched for and bought and written in and stamped, addressed and posted. That’s love.

Love is Jenny who’s loves my kids like her own. Jenny who raises Anaya when I’m not there, adores JJ and cant talk of her heartbreak for Daya. Jenny who saw no boundaries for JJ when I came home crying with the news. Jenny who sat there in silence when I told her of the cancer. Jenny who pretends everything is fine because Anaya cannot know that it is not.

Love is Nani who received a phone call 18 months ago and immediately dropped her world to help keep ours going. The same Nani who stood in the kitchen and told Daddy it was going to be ok when he stood there broken and unable to stop the tears. Love is Nani always being solid for everyone else when inside she’s heartbroken.

Love is the deaf signing teacher who beams with pride when she sees Jasmine and signs about how proud she is of little JJ who has overcome so much.

Love is Nunu who took Jasmine’s hand and walked her around the garden when she could not walk.

It is Esther who sends pictures of JJ messing around.

Love is the nurse who stays late to get the meds in because Daya needs them. Or plays around with her to do her observations in a fun way.

Love is the friend that checks in and says ‘I miss you’ and knows you can’t be the friend you were. And she doesn’t mind a bit.

Love is the mum who comes bouncing in with a toy unicorn and says you’re going to be just fine.

It is the neighbour who says just call me anytime. Anytime.

It’s the hospice team who come in happy and full of fun whilst never revealing their own sadness of losing a child the previous week.

Love is all the people that came together to help a little girl get to New York.

Love is in the strangers who became friends in New York.

Love is the teacher that kept a close eye on her when I couldn’t.

Love is my ‘mum friends’ who can’t imagine what it is like but still stick around instead of pretending I don’t exist.

Love is Daddy who works and rushes home to the girls and puts them to bed, reads a story then starts work again.

Love is the husband that turns up and say ‘go home and sleep’.

Love is the daughter that draws you a family portrait that you stick on the wall across from your bed so that you can see it every night before you go to sleep.

Love is the mother who lost her son and now works everyday to spread kindness and help others.

Love is the support we have received from the thousands of you that read this blog and have chosen to come along on this journey with us.

(This isn’t an exclusive list but the one that comes to mind before my eyelids give up their fight to stay open tonight).

Love is the connection we make with each other when we choose kindness and compassion over and above everything else.

It’s there, you don’t have to search for it. Its not in some other person who will ‘complete you’. Its not in the flowers or the ring. Its not in the restaurant or the food. It’s all around you with people who complement your life for the better.

It’s not in materialistic possessions or expensive experiences. It’s here in your heart. Kindness comes from within and the love you have is your greatest gift.

In a world where you can be anything, be kind.

Be love.

As always, thank you for all the love that you have given over and over again at a time in our lives when things have been at their worst.

Happy Love Day, from my heart to yours.

Zog

Slowly, slowly….that is how we are getting through this. Sometimes it feels as slow as a sloth but it’s very much a few steps forward and a few steps back. Our team are great. We have had a few visits from friends. It lifts the mood and curbs the loneliness. She is not neutropenic which makes it easier. If you want to come please let us know. We are living in one air conditioned room and lacking in social contact!

We have been up to the same things. Playdoh, Duplo and Zog the movie. Cuddling and more cuddling. Day and night cuddling. Watching Zog whilst cuddling.

Zog is a lovely little courageous dinosaur who goes to school and learns new things. He tries his best every time to get a golden star……..we watch it a lot.

Little Booboo has been vomiting and dealing with feeding issues. She’s been very unsettled however she’s getting better slowly; and then suddenly she may go downhill again because something new is done. She’s coped very well as there has been a lot going on for her. She’s had another ecg, ultrasounds, xrays etc. She’s a fighter. The end isn’t in sight any time soon. We are plodding on. She rises every time. If I haven’t said it already…I’m proud of you. I’m proud of all three of you. You are not just my daughters, you are my gifts. I cherish you. I feel so full of love when I think of you. You make me smile.

We had a wonderful chap visit us from GOSHarts. He played us all sorts of tunes. He was fab. I think I probably enjoyed it more than Daya. It was brilliant. He was great with her. We have created a space on the floor to play as we have nowhere else to go. Jenny our play lady (who Daya adores) made a hat out of two sick bowls and some straws from Leon.

We build things and Daya enjoys breaking them down. She loves and I mean LOVES ‘tidy up time’. She did not learn that from me! I think this might be the only benefit of the nonsense YouTube videos these kids watch. Spider-Man aka Tom Holland came to visit the children on the ward.

He was lovely and very friendly. He played Spider-Man Duplo with Daya.

And then we had Chase from Paw Patrol….

It’s been a tough week for Daya. She had her NG tube put down 6 times in one morning. It was a tricky and horrible process. It travelled back up a few times and she started choking. I had to put my fingers into her mouth and draw out all the blood and mucus and the tube as well. She’s had more vomiting than usual. We spent a lot of time watching little Zog again and cuddling in the cot. Again not much sleep.

Then as if by magic Zog appeared…he’s been watching himself on the iPad. I love this little guy. Our new adopted pet.

Something good every month

Me: Anu we need to find something good in every month this year? Things need to change this year.

Anu: Tap Tap Tap (working on his blackberry)

Me: Ok then.

January.

I choose the love from my kids.

I choose our nurses at our local.

I choose our nurses at GOSH in particular Claire, Tara and Nicky who have been amazing.

I choose our playlady who Daya loves.

I choose our consultant who we have had looking after us all week.

I choose penicillin.

I choose Nani, Jenny and Esther.

I choose Leila and Tom.

And the fact that Daya completed her first round of immunotherapy.

Sisters

Me: Anaya, do you miss Daya?

Anaya: yes!

M: What do you miss?

Anaya: Everything mummy. Everything.

Jasmine walks around saying Daya’s name and asking for her. She misses her terribly. She longs for her. Jasmine isn’t complete without Daya. They haven’t been to the park together since last summer which was after high-dose. Daya’s skin was dark and peeling, killed off by the chemicals in the chemotherapy. Jasmine would stroke it and say ‘ahhhh’. Jasmine was so happy to have her home. Daya had been battered by high dose and being home meant the main battle was over for a while.

It’s hard for them both in ways they can’t describe. It’s particularly poignant that Jasmine says Daya’s name given that she is still learning to hear through her cochlear implants.

They have spent a lot of time apart. Jasmine misses her desperately. She asks for her everyday. She strokes her picture. They miss the companionship. Daya has got used to the solitude and and silence, she doesn’t like noise when she’s home. She seeks out solitude and Jasmine doesn’t understand this. Anaya is clearly pained by how long this is all dragging on. It has become a fundamental lifestyle change for her. There are no outings, no swimming, no adventures or holidays for her. We aren’t making memories.

I can’t get everything right for them. I can’t bring Daya home for Jasmine. I can’t fix Daya any quicker and I can’t take Anaya’s hurt away. I can’t even guarantee that I can fix Daya. I keep trying to tell myself that I’ll make it up to them all one day, sometime in the future…but this cancer fight is dragging on; it has hurt us all.

Nonetheless, collectively they are a formidable force. Jasmine is progressing well, Daya is still fighting cancer and Anaya is showing a deep, unfathomable resilience…