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.

Recovery is going to be a long road

Recovery is going to take a long time. Longer than I’d like. I wish that she had bounced back already. Recovery in this case refers to recovery from the surgery.

Recovery from Cancer isn’t possible. It takes something from everyone. You’re not the same after. Anaya won’t be the same. I won’t be the same. Daddy won’t be the same. Nani won’t be the same. Jenny isn’t who she was. I’m not who I was….we are all changed. Our nurses and friends are changed.

It also takes a lot from Daya. It takes her hearing, her strength, her strong heart muscles are now weakened, her fun times, her energy, her fat, her muscle tone, her weight, her nails, her hair, her nerves……some things will grow back. Her nails have regrown. Her hair is starting to come back….the rest is a legacy of cancer. You don’t come out unscathed.

For now the demands are high for all of us.

I have sat by her side all day. Administering her medications and comforting her. She’s very clingy and weak. I’ve captured her vomit in sick bowls several times. I’ve kept notes of the day. I’ve given her milk feeds several times throughout the day. I’ve held her line down to stop her vomiting it out. I’ve carried her around the house and stroked her head through every painful spasm in her intestines.

Jasmines been wonderful but Daya can’t stand having anyone around. So now I’m parted from Jasmine again.

I miss you beautiful. I miss how you would walk into the room and smile cheekily. I miss your funny words and watching you walk around. This will take time but we will get there.

About last night…

We went to see our extended family last night.

We went back to our local… and who should be there but….some of our favourite nurses and our favourite Dr JD.

It was freezing. It was hard having to leave home and go to the hospital. It’s always wonderful to see our troops.

One of the most touching moments that will stay with me forever;

‘You’ve brought our daughter back to us. Thank you’.

Nurse Anonymous.

We had a brief but good catch up. They came into our room to see us and give Daya her cuddles. As we went in, we surprised one of our nurses who wasn’t expecting us until later. She literally jumped up and rushed over shouting Daya’s name. She was so excited. She has looked after Daya a long time. I can only liken it to a child who has been told they have a new puppy or has just been told they are going to Disneyland next week. It was brilliant. She made us smile.

They cried. They made Daddy (almost) cry.

‘You did it. We have missed you. She’s like our daughter. She’s grown up with us. We all love her. You did it.You. Did. It.’

And some strong words and a solid hug from Nurse C who was on her way home…made me realise how far Daya has come and how much she has been through… and how much we are loved. They make us feel safe.

Me: it’s good to be home.

Daya was fitted with a new NG tube. She has lost a lot of weight and muscle tone. This is down to a combination of high-dose and surgery. She is very skinny.

oh MY G.O.S.H

I had no idea how much I loved GOSH until today.

I knew I loved it. I already knew there was a depth of feeling and appreciation for these wonderful people and this beautifully adapted child-centric Hospital.

What I wasn’t prepared for was how happy I was to see our team again. We went to see them for an appointment yesterday. 😁

It felt like being home again. This is our normal. We are so happy to be back – all of us safe and sound. So happy to be talking, in person, to our team again. I’ll maintain their privacy but will nonetheless state that were I not sitting on a hospital bed, next to a clingy Daya, I would have hugged them. They are familiar. They are part of this journey. They were happy too. Daya was apprehensive. All the dressing changes and trauma she has faced recently has changed her. She is a lot more apprehensive and cautious. I think the timid bear might turn grizzly one day soon. She doesn’t want to be handled anymore. She’s been wonderfully cooperative for dressing changes, IV medications or observations. Not anymore. She did however crack a half smile by the end of our appointment.

It’s been over a year since we all first sat down to start this process. The same two people, at GOSH, have journeyed with us throughout. It’s not easy for them either. We just have our journey to carry. They have plenty more.

Anaya came too. She’s still so small but I think it’s important for her to see that GOSH is a positive place. She also met some of the other kids having treatment and cheered them up. She played in the playroom with some of them whilst we spoke to our team. They liked having her around.

She dressed herself. I don’t interfere too much. She growing up – she’s not a toddler anymore or a preschooler. Those years have gone now. My little bundle of fatty joy and giggles has got taller and asks questions about the moon and ‘ ‘how are cars made’. Daya loves being with her.

As soon as we got home I scooped up Jasmine and went to the park. Just me and her. She learnt to sign snail today and she partly said squirrel. I’ve missed her.

It’s tiring being home. Even a full nights sleep doesn’t help me. But I am so happy to be back with my little people.

Sink or swim

Whatever life throws at you, find perspective as quickly as you can. Without that you will have no sense of the distance you need to travel.

And even if you choose to swim, there will be days when you are too tired. When you stop and feel like you’re going to drown. There will be days when you don’t have the strength and you can’t see over the waves. You can’t predict the storm and you may not always have a ship on the horizon but you need to believe that there is a way through. You won’t always choose the right path, or what seems like the right path at the time, but life is short so make sure you are moving towards a better path.

Learn about yourself as quickly as you can, some might take a life time and still not know who they are or how they became that person. It matters, simply because it determines how you behave and how much you accept. It will free you up of your insecurities and it will free you up to focus on what matters.

Nasty people don’t matter. The are beneath you. And they will always try and pull you down.

If you are good, good people will always be there, no matter what.

Spend more time with your loved ones. If one day you have to swim, you won’t have enough time or energy for them. And your kids will grow up with or without you there. It’s best you are there when you can be.

Good doctors and nurses will always take care of your loved ones without being asked. They already know what’s required of them. They put people before their careers. They put their passion for the profession first. You will never have to ask twice. If you don’t get what you think you need, ask questions. It may not be the right request at the time but you will learn something none the less. And fight for what you must get. Remember, I love the NHS. I love it with full force. I’ve personally had some good and bad experiences for myself and for my kids. I am not blinkered. I am aware. I’ve encountered amazing doctors and nurses and I can assure you that the ‘useless’ ones stand out a mile even to their own peers. They don’t get to stay long. Speak your truth. The good will welcome it. That’s all you need to do.

We have been home a few days and it’s been difficult. An adjustment is still taking place.

It’s great to be home but it’s also hard to adjust to being home. We have been through something very difficult. Very, very difficult. And it is not the end. It just a part of the journey. The ‘work load’ was bad enough, now it has increased significantly. Daya’s recovery requires more intensive care and support for her, Jasmine needs all her support to continue and increase (she has a long list too, although it isn’t cancer, it’s still very important) and Anaya needs all the things a 5 year old in half-term needs. The truth is we can’t take her anywhere or do anything at present due to the demands of the other two. However, we are enjoying being home together. And we are enjoying Lego…

Jasmine wanted to go to the park with Daddy the day after we came home. I said I’d briefly take Daya too. As we walked out the door and turned a corner, I could see all that was familiar before me and I started fighting back tears. I feel like I’ve been away. I feel as though I’ve missed everything at home. And I feel as though I haven’t come back the same. It wasn’t easy. It never is. I have watched my child suffer and I don’t know if she will survive. No one does. I still don’t know if we have done everything we could possibly do. I don’t know if it’s enough. And if it is, then why can’t she just be ok by now. Everything is the same at home, but I’m different.

‘Oh you’re back, have you unpacked? Have you had a good rest?’

What I wanted to say: are you fucking kidding me.

What I said: no I haven’t unpacked.

It was not a rest at all. Most people struggle to cope with an only-child that has cancer. I have three kids and very little practical support. Cancer is difficult no matter how many kids you have. I don’t think I need to say much more. No, we didn’t have anyone taking turns with us at the hospital. She’s still very young so needs constant parental supervision so she wasn’t left alone for the nurses to take care of her. No, it wasn’t a rest or a holiday. It wasn’t a shopping trip or sightseeing. ‘No I haven’t unpacked’. It’s been full on since we got back on little to no sleep.

I’m finding the relentlessness is too much for me right now as I haven’t slept well. I didn’t sleep enough there, not on the flight back or at home. She wakes up a lot. I’m exhausted. I’m avoiding people right now and in turn conversations. They will ask me questions, I don’t want to re-live anything. If you hug me, I might cry. And I’m afraid, I will struggle to contain it.

The most beautiful thing about being home is that I have cuddles with my kids. That I can hear their laughter. Their antics fill my days with joy. I can smell their hair. Watch them dance around and talk about everything and anything. That sound of their just being around is wonderful. Anaya seems different. A bit more grown up. She’s relaxed and settled. Shes missed us. Jasmine is a powerhouse. She’s always happy. Beavering away and exploring. She’s very interactive and fun. She brings so much joy to our home. Anaya is dancing around the house and makes me think about things when she asks questions.

And Daya…Daya is weak, tired and happy to be home. There’s not much coming out of Daya. I lost something in Daya after high-dose chemotherapy. She’s not been the same since. With all the other chemotherapies she bounced back. After high dose, a few small switches turned off and they haven’t turned back on. She’s physically withdrawn. She’s tired. She’s lost her spark – both physically and in terms of her personality. However, I hope when she physically comes back that she will be back to herself. Things will take time. And I hope she comes back to us in time. She’s happy to be home. She’s happy to be with her sister. Anaya is happy to have her home.

Daya has been getting lots of cuddles from Anaya.

Daddy and Jasmine looked for ‘the cat’ under the cars.

Jasmine watched Anaya with her Lego.

We remain grateful that we got the primary tumour out. We remain grateful that we came back with her. We remain grateful to be home. I am thankful to have my family back together.

Fit to Fly

Daya was declared Fit to Fly on Daddy’s birthday. It was a great day.

We went back to the kitchen that she first played in when we arrived 5 weeks ago. It was the first time in a while that she had moved around by herself for more than a few minutes. She’s lost a lot of weight and currently wears 12-18 month clothes which are loose on her.

We had an X-ray, met our favourite fish and then we met the favourite surgeon.

I really do love this guy. Not a granule of arrogance. He listens carefully and is entirely humble. I think I was the quietest I’ve ever been. Daddy and I love being around him. Everyone does.

‘I’ve got your fit to fly right here. Let’s call your consultant in London….it’s been a pleasure, she’s a fighter, we are here anytime you need us. Keep in touch. Send us pictures and keep us updated’.

I got the impression that they wanted to keep her there with them until the end of her treatment. They really did want to finish what they had started. It’s clear they were sad to see her go.

The surgical team surprised us. They came in to say goodbye at the end of our last appointment. They never really discharge you in a place like this. They like you to keep in touch and they send you on your way with a lot of love and support. They are excellent. We will miss them. Daya’s operation was 12 hours in total and not the 11 we initially thought. They started earlier. The surgeons stayed until the end. The team is in this picture. We called our London team to connect and hand over.

It was a special moment. There was a lot of love in the room for little Daya. They should all be very proud of what they have achieved.

We are thankful. It was an amazing moment. We are grateful for their skill and thankful for the conduct.

We walked out of there elated. We will miss them, but not the process. I was a little bit sad to be leaving but glad at the same time.

I’m looking forward to seeing my kids, our friends, our medical team in London and getting back to ‘normal’.