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Original poster

Azaylia Cain

835 replies

LetsGoChamp · 28/03/2021 21:23

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.

OP posts:
chimom · 14/04/2021 10:56

I know ash personally, was their for the clap yesterday and was so nice to see everyone out.
I'm in two minds how I feel about it all now.

OllietheOwl · 14/04/2021 10:59

This reply has been deleted

Message withdrawn at poster's request.

withpeaceandlove · 14/04/2021 10:59

Seriously, why are people not capable of keeping their opinions to themselves in situations like this? Better that the thread be removed if it keeps heading in this direction as it won't be helpful for anyone

HidingInTheFridge · 14/04/2021 11:05

I don’t see how these comments are appropriate on a thread about a dying baby?

CookieBlue · 14/04/2021 11:08

This reply has been deleted

Message deleted by MNHQ. Quotes deleted post

Jchina · 14/04/2021 11:13

A few years ago there was a little girl whose Dad photographed her (as a photographer) in the final stages of cancer and he was celebrated for showing the true face of a horrendous illness that (quoting from the time) “isn’t all about smiling children with bald heads”. I find the videos they are posting incredibly distressing but it IS their choice how to deal with this.

In their position would I now shield my daughter from the camera? Yes probably I would, but I thank my lucky stars I am NOT in their position.

You could speculate about what Azaylia would want but she is 8m old, she doesn’t know what she wants. What the parents want matters too and if they get some comfort from sharing on social media that is up to them, regardless of whether other people are comfortable with it or not.

Bluebird2021 · 14/04/2021 11:28

I’m assuming lowering pain meds was backed by doctors? That’s my only concern, the child feeling comfortable as she ends her days.

Couldn’t really care much less about social media if I’m honest.

MNHQ
HopeMumsnet · 14/04/2021 11:29

Hi all,
We'd like to re-iterate that really, all MNers can and should do right now is support this family.
We know from experience here at MNHQ that often friends and relatives , even parents and grandparents, find these threads in the future and we'd very much prefer if the messages could be kept supportive. We hope you understand.
(In fact we are going to move this out of AIBU now, as it wasn't really the best board. We'll move it to Chat).
Flowers and our kindest thoughts to the Cain family.

OllietheOwl · 14/04/2021 11:42

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Message deleted by MNHQ. Quotes deleted post

withpeaceandlove · 14/04/2021 11:43

@OllietheOwl agreed, also the 2 that falsely accuse him of removing all pain medication. That's a really awful accusation to make.

Cinderellashoes · 14/04/2021 11:47

I work in paediatric oncology in London and what is being shown on the videos is what happens. Why shouldn’t it be shown? They have done such a lot for raising awareness of stem cell transplants and childhood cancer. Just because you’ve not seen videos of it doesn’t mean it’s not happening. THIS is the reality of childhood cancer.

kirinm · 14/04/2021 11:50

I kind of wish I hadn't started following Azaylia's story because it is utterly heartbreaking. She is such a beautiful girl and it must be so devastating for her family to have to watch their baby dying.

I know nothing about infant cancer but I'm assuming end of life care would be provided by a hospital? They obviously have the support of the hospital in any event - we know from recent cases that doctors will always put the rights of the child above their parents wishes so I cannot imagine that she is without any pain relief even if her parents wanted that - which I should say, I do not believe.

BoneAppleTeeth · 14/04/2021 11:52

@DifficultPifcultLemonDifficult

Of course its possible to share without photos, but they want to show off their baby, they want the world to fall in love with her, and we have.

Aside from that their photos and videos will likely help people in the future.

I have had two very ill kids and I had no clue what to expect, what they would look like at varying stages of their illnesses, what was 'normal' for their conditions or what would happen when they died. There is very little information out there, and their choice to share their beautiful daughter with the world will help countless people.

Such an important point here Difficult, in their darkest days they are creating awareness that will provide invaluable for parents in the future. For them, they want to show off their precious baby girl, but the influence of that choice will provide wide reaching support for parents who walk a similar path in the future.
BoneAppleTeeth · 14/04/2021 11:54

@Cinderellashoes

I work in paediatric oncology in London and what is being shown on the videos is what happens. Why shouldn’t it be shown? They have done such a lot for raising awareness of stem cell transplants and childhood cancer. Just because you’ve not seen videos of it doesn’t mean it’s not happening. THIS is the reality of childhood cancer.
Agree 100%.
OR101 · 14/04/2021 11:56

No-one can say they would or wouldn't do this or that in this situation as no-one will ever be in their exact shoes, you cannot and should not, compare or anticipate what you think you would do, or what you think they should be doing. Even if you have experienced or do experience this heart breaking situation, you will have your own experience, it will not be the same as theirs or anyone else's.
They've come home to give their baby a normal life before she sadly passes, they're having their firsts with her and sharing them as any other parent would, it is very sad to see Azaylia so poorly. However, they have a very large following they've documented, educated and sought support from social media from the start. I think they are posting and sharing to open up others eyes to resources they can find if they were ever to be in that situation or are in that situation. If a parent is in the same situation and thinks there is nothing else they can do, they may be finding strength through this story and knowing what to ask for from the doctors etc.
They have been so upbeat and positive for so long, posting updates, I think if they stop going, even for a second, the reality of the situation would overcome them, and they just really want to be present and be happy with their baby until the end, just let them be to post what they want. It shouldn't have been questioned or mentioned in the first place as like I said you can not compare yourself to anyone else for that matter.
I'm a similar age to Ashley and sayffia, and they have truly inspired me.

viques · 14/04/2021 11:59

I think these parents are dealing with a situation that few of us can imagine.

I don’t know how I would deal with is because thank heavens I have never had to make that choice, I suspect I would do things differently, but I don’t think anyone is in a position to judge them for their choices.

They have raised awareness of childhood leukaemia, have encouraged many more people to sign up to bone marrow donation lists, and have raised a huge amount of money to fund research . I thank them for that and wish them solace in the dark days to come.

Habbyhadno · 14/04/2021 12:13

I only started following their stories a few days ago. They are in a totally impossible situation. The videos are upsetting, but I support their decision to show their journey totally. Childhood cancer IS horrific, and they want to share and celebrate their beautiful baby's life and raise awareness about leukaemia.
They seem like such an amazing family and I'm so very sorry this is happening to them and everyone else who has dealt with and who is living with this too. It's really unfair. I don't think anyone else should be judging them at this point in time.

Cinderellashoes · 14/04/2021 12:21

It’s seriously pissing me off that anyone would slate them. It’s happening, just because you don’t know about it doesn’t mean it isn’t happening. This little girl isn’t the only child dying from cancer!

Yapplepearora · 14/04/2021 12:22

Absolutely disgusting to say he took her off pain medication. He lessened it and said she became active and spritely, and it prompted him to take her back to the hospital and do whatever he could to get more treatment for her. Unfortunately that didn’t work out. I’m sure they know their baby more than we do and he wouldn’t have lessened the pain meds if he thought it was causing her to suffer.

There is nothing wrong with them choosing to be at home either, if god forbid I was in that situation I wouldn’t want my baby to be in a hospice. We see a few minutes out of their day on the stories, stop making assumptions about her care.

BridgetJonesDaiquiri · 14/04/2021 12:28

De-lurking just to wish all the very best to the Cain family. Azaylia is an absolute superstar and her parents are clearly doing all they can to support their child. It is beyond heartbreaking to see this happening to an 8 month old (or to any child), but they've done so much to raise awareness of childhood AML and stem cell donors and that will be Azaylia's legacy. If she/they can help one other child or family, then publishing her story will have been worth it. Hopefully in years to come with more CAR-T therapy and other novel therapies available, these stories will be fewer and far between.

LetsGoChamp 👊🏻

Original poster
LetsGoChamp · 14/04/2021 12:37

It’s heartbreaking to see this has become a thread about who knows best. This is a place of support to people affected by Ash, Saf and Azaylias journey. If you are not here for that can I respectfully ask that you don’t comment. The talk has correctly been moved to chat now so that we can continue to be there for each other and not slate the parents or how they’ve handled it. This is their child, themselves and the doctors involved surely know best, not an individual who’s seen a few snippets on SM.

To all those still here supporting, thank you.

OP posts:
Original poster
LetsGoChamp · 14/04/2021 12:38

And thank you to @mnhq for watching this post for us

OP posts:
Original poster
LetsGoChamp · 14/04/2021 12:38

Sorry that should of read @HopeMumsnet x

OP posts:
Original poster
LetsGoChamp · 14/04/2021 12:44

@chimom I’m sorry you’ve had to read some awful things by some not very nice people but just know this thread is just for some people who have been truly affected by Azaylias story and fight and we use this space to support each other.

We have all felt every set back deeply as parents, we’ve cried and cheered and clapped for her. The choices are not for us to question and most of us understand and respect that. Don’t change your judgment for your friends and that little angel based on a few loose comments by people that have no knowledge on the situation. None of us but her parents, family and doctors do so that’s why we (mostly) are not judging.

Again I will say, if you are not here to support, please don’t comment!

OP posts:
Yapplepearora · 14/04/2021 12:44

That child is clearly loved and adored and I don’t see how anybody could doubt that they are doing the absolute best they can for her based on what THEY know her needs are.

Moving on, the parents have done absolutely brilliant in raising awareness for childhood cancer. They had difficulty finding a bone marrow donor due to her mixed heritage, and publicly asked people to donate. IIRC somebody who works in bone marrow donor applications said they had thousands of applications in one day when they usually get a few a day, which will go on to help other patients. Ashley made a lovely video with Azaylia about it.

I think people shy away from thinking about childhood cancer, it’s just such an awful thought and because it is so rare people feel justified in not having to think about it because they know it will probably never affect their child.