Azaylia Cain

[LetsGoChamp]

I can’t stop thinking about this poor little girl. My heart hurts for her family. I know she’s not the only child fighting a life threatening illness but she’s all I’ve thought about today.

Sorry if this post upsets anybody that is familiar with this little girl.

@OllietheOwl I think that was me although lots of others have said the same. It's been a real comfort to me to think about how for Azaylia, this is all normal. She's just a sleepy, warm, pain free baby, surrounded by her mummy and daddy, all the time. I hope she slips off, contented and calm.

I am glad that she has that, at least. The real pain, the enduring heartbreak, is for her parents, who will need to survive life without their child.

@gratefulmum1 thank you for answering.

I had been wondering as my own experiences of palliative care had led me to hope that towards the end they are so mindful of discomfort and pain that the patient is often unaware of much, except being comfortable and comforted by the presence of others.

Thank you. In all honesty even though I am reliving it to an extent I am glad it is bringing child cancer into the sunshine.

It’s not all smiling bald children

Thank you for this.

My heart has been too heavy thinking about this and hoping she wont be in any pain if she slips away xx

Still praying for a miracle 🧡🧡

@Hannsmum- I am too, always 🤞🏻🤞🏻🧡🧡

Hope they’re doing okay today. Can’t stop thinking about them all xx

Ashleys just put a lovely post up of taking her for a walk in the pram - fresh air, blue skies. Azaylia looks comfortable and still as cute as a button. What a champ! 🧡

Ashley’s story broke me when he said the palliative care team said make the most of this weekend 💔 I can’t help hoping there will be a miracle

He just added another update and the palliative care team have told them to enjoy this weekend especially and he says he understands what they are trying to say but that he knows her strength and he’s positive in his mind. What a man, What a Father, What a champ 🧡

@Wingingthis

Ashley’s story broke me when he said the palliative care team said make the most of this weekend 💔 I can’t help hoping there will be a miracle

Me too🙏. The fact she’s still here after they have a 1-2 day diagnosis proves she’s already a little miracle. You can see how proud they are of her, it’s amazing 🧡🧡🧡

Oh both of their posts are heartbreaking. I just hope they have the support they are both going to need.

They are both so inspirational. The mental torment must be overwhelming at times. Azaylia looks like she is comfortable and enjoying a day out in the fresh air. It’s so nice to see. Let’s go Champ

She proved them wrong all those weeks ago. Going to pray even harder for her tonight. Come on champ 🧡

This latest update ..this weekend??

To be honest I don't thinking im coping.im seriously struggling

Don't know how i got to know about this in the first place

Im just burstin into tears every second.i haven't slept, hardly eating seeing this in reality .I'm struggling

I feel like a mess
Oh God why is she suffering all these?

Does anyone know if she is in pain, is she comfortable ?

Is she aware? How is she feeling

Ashley's update today...what an incredibly strong father he is.
I remember when we were told by palliative care that my father would pass within the week. He was still quite "with it" at that stage (but unaware/in denial) and asked me why I looked so sad and kept telling him I loved him. I knew then I was acting differently and made sure to carry on as normal so he didn't know. The thought of doing that for my baby breaks my heart. I hope they will be able to take comfort from how they have acted these past few weeks (and before). As a pp said, Azaylia knows no fear, only the comfort and love of her family.
Sending love to all and thank you for helping me feel less alone in this bizarre grief that I'm feeling for them all.

@Hannsmum

This latest update ..this weekend??

To be honest I don't thinking im coping.im seriously struggling

Don't know how i got to know about this in the first place

Im just burstin into tears every second.i haven't slept, hardly eating seeing this in reality .I'm struggling

I feel like a mess
Oh God why is she suffering all these?

Does anyone know if she is in pain, is she comfortable ?

Is she aware? How is she feeling

I’m so sorry you are feeling this way, with grief and sad situations where you have empathy there’s no real ‘normal’ way to feel. I was very very sad the weekend they were told there were no more treatment options. If you scroll back a little I wrote a post after speaking to my sister who is an intensive care nurse for children. Last week alone she had to take 3 children to the morgue. She is a new mother herself and I asked her many questions about her job. She said that most children with ALM / Cancer die peacefully, unaware and on pain medication. The palliative care team will be working closely with the parents to ensure she’s as comfortable as possible.

It’s a ‘real time’ story and we are along this journey with them, that’s why it has felt so raw for so many. Azaylias mother today asked everyone to enjoy their day and their moments. As we are powerless in this awful situation, try your best to honour those wishes. Tomorrow is never promised. Keep talking if you need us. This thread has been another wonderful example of the humanity and love come via Azaylia 🧡

@Hannsmum- I have been feeling the same, I haven’t slept properly in over a week. I feel silly admitting that because she isn’t my baby and her parents are being so strong.
But I’ve never heard a story like this one, I cannot get my head around the horrendous journey this little baby has been on in her eight months. Call me naive but i just didn’t think it would ever get to this stage where they wouldn’t be able to treat her anymore.
In my head it’s like how can they not do something for this sweet, innocent, beautiful baby?
Also to feel so much empathy and love for people I don’t know.
I’m a different person because of this, I’m not taking anything for granted and appreciating all I have.
You are an incredibly special girl Azalyia.
LETS GO CHAMP 🧡

If you are struggling you really need to take a step away from this situation because health professionals get support with this stuff but the lay person doesn’t and I would hate for anyone’s mental health to deteriorate. AML patients are at risk from bleeding, infections and respiratory compromise. If you can avoid those, generally these patients just become more sleepy, more dozy, like they’re in a very deep and comfortable sleep, and drift off completely unaware. She will have a palliative care team who are absolutely experts at ensuring comfort - after all palliation is ensuring comfort and quality of life, not any suffering. This looks to be what’s happening. I work in a different part of the country but this is my experience with oncology. And it’s awful and so distressing but sadly not as unusual as you would think. I have looked after literally hundreds of children who have exhausted every treatment option and passed away one amazing thing from Azaylia’s story is the massive awareness now we all have of paediatric cancer.

@gratefulmum1 thank you.

It's so raw.

Thought my mental health could cope with this story and seeing her like this

For the first time, I wanted my kids home from afterschool club and nursery early today and went to pick them early. When on a regular im happy they are out of the house during the week.

God I pray for her parents and praise those who work in paediatric oncology

I m just going to have to knock out with a sleeping pill tonight . I hope it works

@cinderellashoes thank you for explaining.

It's just hard

[quote Hannsmum]@gratefulmum1 thank you.

It's so raw.

Thought my mental health could cope with this story and seeing her like this

For the first time, I wanted my kids home from afterschool club and nursery early today and went to pick them early. When on a regular im happy they are out of the house during the week.

God I pray for her parents and praise those who work in paediatric oncology

I m just going to have to knock out with a sleeping pill tonight . I hope it works[/quote]
I did the same a few weeks ago because I had that plus a traumatic safeguarding issue at work and it all got on top of me so I had a sleeping pill and did feel clearer in my mind after a nights sleep. I hope you feel better in the morning and keep talking to us if you need too. The Samaritans are also amazing to speak to about things like this if you find yourself needing a listener who is detached from you x

@Hannsmum it’s really tough isn’t it? I’ve tried not to check any stories or come on here before I go to bed as if I see something sad it weighs on my mind too and I can’t sleep. 9pm is my cutoff for anything social media. If you’re really feeling low from the updates, maybe try and do this too.

We need to just keep thinking how amazing and special this little girl is. Look at what she’s done in such a short life. Her parents and everyone who knows her must be so proud of her.

@Cinderellashoes

If you are struggling you really need to take a step away from this situation because health professionals get support with this stuff but the lay person doesn’t and I would hate for anyone’s mental health to deteriorate. AML patients are at risk from bleeding, infections and respiratory compromise. If you can avoid those, generally these patients just become more sleepy, more dozy, like they’re in a very deep and comfortable sleep, and drift off completely unaware. She will have a palliative care team who are absolutely experts at ensuring comfort - after all palliation is ensuring comfort and quality of life, not any suffering. This looks to be what’s happening. I work in a different part of the country but this is my experience with oncology. And it’s awful and so distressing but sadly not as unusual as you would think. I have looked after literally hundreds of children who have exhausted every treatment option and passed away one amazing thing from Azaylia’s story is the massive awareness now we all have of paediatric cancer.

I try to step away but its difficult

Thank you for explaining

Yes it is. One thing that helps me is to know that this is always going on, but the cure and survival rates for paediatric cancer are so GOOD, poor little Azaylia has just been so so unlucky. Maybe in ten years time there will be more that can be done but she is comfortable, has no idea what’s going on which is a real blessing and looks really settled to me.

[quote OllietheOwl]@Hannsmum it’s really tough isn’t it? I’ve tried not to check any stories or come on here before I go to bed as if I see something sad it weighs on my mind too and I can’t sleep. 9pm is my cutoff for anything social media. If you’re really feeling low from the updates, maybe try and do this too.

We need to just keep thinking how amazing and special this little girl is. Look at what she’s done in such a short life. Her parents and everyone who knows her must be so proud of her.[/quote]
That's the thing "her short life" why ??

Why can't she and all these little babies have a chance to play with toys, go to Disneyland, have Ice cream, play with other kids.

She deserves a long life. It's just unfair see her go through that pain

I think my emotions are all over the place .this thread is not about me.i need to take a step back

Unfortunately im the only adult in the house for now .wish someone took my phone from. Me

This latest update just broke me and seeing her helpless in the buggy thats why!

@Hannsmum I’m so sorry it’s got to you so badly, I know how it feels and it’s horrible. Everything you are saying is right, she should have all those wonderful experiences. Just know she doesn’t know about these things. I used to teach antenatal classes and the parents used to always ask me what they needed to buy there baby, where to take their baby etc. The only thing babies need aside from essentials (food, good hygiene and sleep) is love. Being held close, having their senses simulated, smelling their parents, seeing their loved ones and hearing them. Knowing they are close and doting on her every need is worth a million Disney trips to a baby. They have a steady stream of loving family members and friends around them and will have professional and medical support 24/7. You sound like a brilliant mother if you are so invested in a baby you haven’t met. Use that energy to create the most special memories with your babies and where you can in your life, honour Azaylia and what her journey taught you. Sending hugs