The camel’s broken back

So the ‘straw that broke the camel’s back’….was ….exhaustion. And some horrible strep throat thereafter. I’m in bed at home.

Daya has had pain, nausea and vomiting during immunotherapy. This all makes her restless, fatigued and irritable. She has regular medication and continuous pain relief. She has small short naps. She’s unsettled most of the time except for bursts of about ten minutes where her pain relief kicks in. She cries out in pain. She has a great deal of nausea. Her heart races too fast indicating that she is in pain.

I’ve spent 8 nights in a row awake from 1am to 6am. I’ve had such little sleep that I’ve been unable to function. We have been stuck in an air conditioned room with the curtains closed. She’s not allowed to go out and she doesn’t want the curtains open. When she’s awake I entertain her. I cannot sleep if she is awake as she cries out for me again and again. I spend hours sitting in her cot or laying by her side perched on the side of the open cot. She cries out in pain. Our nurses have been great.

My body has started to ache. I have progressively declined over the week. I’ve been nauseous due to fatigue. I’ve been permanently jet-lagged. I’ve been hot and cold. The only time I’ve been out was into the cold night air for five minutes. I felt physically sick. I’ve got strep throat now. I’m in bed at home and can’t move my body. She’s still there struggling.

We cried together

We cried together today. We cried for the loss of a beautiful child and the unbearable sadness that weighs down upon us all is just awful. The loss of a child is a loss that should never be felt by any parent. The loss of a child is a loss that is felt by every parent. Here we are; unable to endure the unthinkable.

We have cried everyday since hearing the news. We have been apart for 8 days. We haven’t spoken. What is an awful situation was made heartbreakingly beautiful at the funeral. However Daddy couldn’t get a word out to tell me what happened. He said it was ‘heartbreaking’. Aside from when Daya was diagnosed and he cried in the kitchen, I have never seen him this broken. I have never seen him cry like this. I haven’t been this broken since that day. Life is unforgivably cruel.

You must break sometimes in life. You will get back up. Maybe not as high as before. But you must break. Whilst I often say ‘it is love that binds us’, it is also only love that can break your heart.

Stickers for bravery

We are over half way through this round. Woohoo.

She’s had morphine. She’s on fentanyl. This is pain relief that is being administered continuously into her body. It’s on a pump that has a continuous background dose. She can have extra on top. You might remember it from high dose. She’s on a whole bunch of meds in addition to do with pain, anti sickness, blood pressure, antihistamines etc

She has had either a low grade fever or has been cooler than normal, it’s been up and down all week. She has had tachycardia (when your heart is racing) for most of the week. This is likely down to pain more than anything else.

This is why sleep has been scarce this week. We have done six days straight. I’ve left the room for a brief stint but she hasn’t. The lights in the corridor are very bright outside our room and the air is cold outside the hospital. It’s a shock to the system. Daya is talking more and more. Her speech has arrived early for her age. Given that she only ever has an adult for company I’m not surprised. It’s become harder to pass the time as she doesn’t feel well enough to engage in play and we are both exhausted.

Being OK

I believe that we are going to be ok.

We just have to get through the next year. Daya will be three before this is over. Then we will have the ‘5 year wait’. In between we will have scans to see if it has come back.

I feel that we are going to be fine. The surgery has been a huge step in the right direction.

Neuroblastoma treatment is intensive and long.

The chemotherapy is very destructive. This kid has been through so much. She is a tough and lovely little character all at the same time.

We were up for 6 hours last night. Daya is sitting up in this picture. She alternated between frantically itching, silently sitting and then flicking her body around the cot. There is a nurse in this picture. She is carefully administering her medications whilst whispering ‘Daya my love do you want to go to sleep now. Shall we get elephant and have a nice sleep’.

It has been a tough week in terms of sleep deprivation. I’ve had two and a half hours every night. A doctor woke me up today when I was deeply asleep, for a two minute chat and then walked out with a ‘get some sleep’.

My greatest fear

Children are designed to be free. To explore, to laugh, to run.

To learn, to love, to say funny things, to grow…

They are not designed to be cold and still.

Leila left a magazine behind yesterday. I think every parent can relate to this.

My fear is seeing my daughter in a coffin, cremating my child and having to live on. Very few can truly understand mine.

2.5 hours

In the last 3 days I’ve slept for 5.5 hours in total.

2.5 hours – That’s the amount of sleep that has divided up two days.

Daya has been up and down a lot due to her meds. I keep reminding myself that nothing is as bad as high dose. There are a lot of beeping machines or as Daya says, ‘oh no sheen beeping, no flow’. Every oncology parent will know what that means. The beeping keeps me up most of the night. She has six pumps on the go. I often rush over to silence them so as not to wake Daya.

We had a vibrant visitor yesterday. Aunty Leila cheered us up. She’s hilarious. We love her. We have missed her. She had lots of energy to play with Daya.

Uncle Tom came the day before with stickers and had fun with Daya. Daya was chatting a lot. After he left she said ‘oh no! man gone! Daya sad. He funny man. He give Daya stickers lets play.

My body aches. Today, in an effort to keep awake, I sat down all curled up under a hot shower (with a plastic bag tied up over my head as a shower cap). I think life would be so much easier and efficient if I didn’t have hair on my head. It was a funny sight. I smiled at myself for a moment, ‘oh if my friends could see me now’. I saw Daddy for half an hour. Daya was happy. I haven’t seen the girls all week. I’m so tired I feel physically sick.

Daya did her dressing change; with very good instructions for her nurse. She even told her to clean the line because it was dirty. Her nurse laughed. Daya’s learnt a lot from Magda and Ruthie. Her first word was ‘wipe’. Sad really when you think about it.

Her surgery scar has turned into a beautiful pinky-silver sliver. It gives nothing away of the enormity of what took place inside. It curves around diagonally up her back.

Our team here are wonderful. We are blessed.

Our friend’s little girl has not been far from our thoughts. Her funeral is tomorrow. It’s been difficult to talk about as we are so deeply saddened by this personal loss. Daddy will be going alone. He knows he will not cope well. How can one when the sadness is so overwhelming and raw. I wish I was there too. It will be difficult for everyone. Our worst fears are now a real living nightmare for our friends. She has gone too soon. There are no words.

Immunotherapy

We are into the first 24 hours of immunotherapy.

Daya’s been in bed for over 24 hours. It is hard to move as we are attached to so many things.

This is us. Lots going on.

Daya proudly gave a thumbs up to herself for successfully doing all her observations every ten minutes.

We have been playing a lot with playdoh and painting.

The good news is that so far we are ok. This isn’t as tough as high dose chemotherapy or surgery, we have had some side effects but we are doing ok so far. We are well looked after by our wonderful team.

However she has been awake for 13 hours straight. I’m exhausted! We are both tired and a bit lonely.