That must’ve been so scary for Azaylia & her parents 
hope she has a day full of rest, love and comfort 
hope she has a day full of rest, love and comfort 
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Every time I’m up with my baby I always check on little azaylias updates, was so sad to watch Ashley’s stories in the night 
I think about this family daily, it’s just not fair, I’m a mum now my daughter is 8 weeks tomorrow and to think their whole world began to change from that time kills ms inside
I think about this family daily, it’s just not fair, I’m a mum now my daughter is 8 weeks tomorrow and to think their whole world began to change from that time kills ms inside
The world can be so cruel.I'm on the Facebook group and ive got to say I find some people, who although are being nice are being a bit too much (I mean this in the kindest way, I know it is said with love as we all are so affected by azaylias story) I think people praying for them is lovely. We all would absolutely want a miracle to happen more than anything. But posts that she will 100% live if we think positive and now one about celebrating her first birthday and how we can't wait for that and to sing happy birthday is too much. I know it is wrote with kindness and love for azaylia but I think posts like that will make it harder for Ash and saf and more painful. Just my own opinion on this.
Ash's latest story is heartbreaking. How can life do this to a innocent baby.
Ash's latest story is heartbreaking. How can life do this to a innocent baby.
I thought that, it’s too much and it’s not fair on the family. Some people on that group seem quite strange I think
Completely agree with the above, we all hope for a miracle but the reality is we know what the outcome will be and her parents are just trying to get through it. I hate the idea that people die just because they’ve not tried hard enough to survive, it’s really disrespectful
I’m not in the Facebook group but no miracle will happen now. I know people mean well but saying things like that will just make it harder on her parents. The best outcome at this stage is for a pain free baby who is comfortable. I applaud them for doing this last stage at home. My FIL had palliative care at home and it was truly heartbreaking. The nurses were amazing, I honestly don’t know how they do the job they do.
I normally welcome discussions with anyone but that tipped me over the edge and safe to say she got ripped a new one!
A Mum at my daughters school said all you need to cure yourself of any illness is a ‘survivors mindset’ no drugs
I normally welcome discussions with anyone but that tipped me over the edge and safe to say she got ripped a new one!
You can see in every single video Ashley posts he's just a broken man. He's truly heartbroken, I can't imagine how difficult all of this must be for them It's just not right, the world works in such cruel ways sometimes.
It's just not right, the world works in such cruel ways sometimes.I'm not sure when you guys joined the group but I did about a week ago and there was only about 3k members and it was a lovely supportive page. Its now got about 50k which is amazing but it's just full of people saying she will live from positive thinking, they know she will beat it and they can't wait to see her get older and alternate remedies.
In all honesty it is starting to really annoy me. I know it is with love and hope. But that group is for support and those posts will actually make it harder for them. If Ash and saf are accepting what is happening, viewing posts that they know she will live, and that she came home from hospital again last night because they know she's going to survive, and remedies they know will 100% work and save her, it's just wrong.
You can tell they have fought and tried every option they can. I also think it is now too late for alternate medicines, although if they wanted to look at this I'm sure they are.
I am all for positive thinking, praying and hoping for a miracle but not when the posts are going to cause more pain for the family who are after so long of fighting are having to accept what is going to happen.
The first birthday celebration post with her in a pink dress and how everyone will sing to her has really pissed me off though. Its awful enough for them that she won't see that, without seeing posts like that about something that isn't going to happen. I also think when they look back on these posts it will be hard for them.
In all honesty it is starting to really annoy me. I know it is with love and hope. But that group is for support and those posts will actually make it harder for them. If Ash and saf are accepting what is happening, viewing posts that they know she will live, and that she came home from hospital again last night because they know she's going to survive, and remedies they know will 100% work and save her, it's just wrong.
You can tell they have fought and tried every option they can. I also think it is now too late for alternate medicines, although if they wanted to look at this I'm sure they are.
I am all for positive thinking, praying and hoping for a miracle but not when the posts are going to cause more pain for the family who are after so long of fighting are having to accept what is going to happen.
The first birthday celebration post with her in a pink dress and how everyone will sing to her has really pissed me off though. Its awful enough for them that she won't see that, without seeing posts like that about something that isn't going to happen. I also think when they look back on these posts it will be hard for them.
I agree, I don’t even understand how Ashley and Safiyya have handled all this so smoothly, never mind without people manifesting that she will live.
I don’t want to sound patronising but I genuinely don’t think some of them understand how unwell poor azaylia is. As much as a miracle would be lovely, I don’t think it’s going to happen. And I just hope she feels nothing but love and peace in her final days
Just noticed someone has wrote a post on there basically saying what I have but in a better way. That they have fought but are having to accept things. And that posts basically ignoring and saying the doctors are wrong is giving false hope, which isn't fair. There are people agreeing butI agree, I don’t even understand how Ashley and Safiyya have handled all this so smoothly, never mind without people manifesting that she will live.
I don’t want to sound patronising but I genuinely don’t think some of them understand how unwell poor azaylia is. As much as a miracle would be lovely, I don’t think it’s going to happen. And I just hope she feels nothing but love and peace in her final days
Still people commenting back that they know she will be fine
Peoples hearts sound like they’re in the right place but for respectful purposes they should not keep postings things like that. It’s not going to help, if willing someone to live worked then there would be very little deaths. That baby has nothing but a Survivors spirit to suggest otherwise is so so wrong. This disease is too aggressive and too poisonous, they should just realise that there is nothing more Ash & Saff can do. They’ve exhausted every single avenue and they don’t need to read such things now or ever.Just noticed someone has wrote a post on there basically saying what I have but in a better way. That they have fought but are having to accept things. And that posts basically ignoring and saying the doctors are wrong is giving false hope, which isn't fair. There are people agreeing but
Still people commenting back that they know she will be fine
I remember how toxic all this turned with Alfie Evans, and in a way I’m happy to see that Ashley and Safiyya have just soldiered on through, they’re getting everything she needs to make her comfortable and not trying to prolong the inevitable, which goes against any parental instinct, what a warrior family, they’re beautiful parents and I hope to god their lives are filled with no more stress or sadness.
Ashley and Saff are absolutely amazing parents. I can't imagine how hard it is at this stage to accept the reality of what's happening to their baby but still fight for her to be comfortable and happy. Azaylia is in my thoughts always.
I listened to Ashley’s stories this morning and as a medical professional, i feel abit torn about this situation.
She has been discharged from hospital to go home for palliative care. This means most if not all medical treatment will not be carried out as this will prolong her suffering. The tumours, especially the ones on her spine and brain will cause tremendous amount of pain for her. I understand as a parent they want to do everything they can to help her, i would do the same too. But from watching Ashley’s video I assume that they demanded the platelet transfusion for her. A platelet transfusion she will need a cannula. Inserting a cannula is very distressing for children and adults, it’s painful and to add ontop of that there is a chance of infection being introduced. She is essentially bleeding from the inside and a platelet transfusion will only ‘help’ her for 12 hours or so. What I am trying to say, in a very long and winded way is that I hope that Ash and saffy are actually ‘coming to terms’ with her passing away. I mean, no parent can come to terms with it as such but what I meant is that I hope they are mentally prepared for it. I feel that they going back to the hospital asking for treatment means that they haven’t fully accepted that she will pass away.
She has been discharged from hospital to go home for palliative care. This means most if not all medical treatment will not be carried out as this will prolong her suffering. The tumours, especially the ones on her spine and brain will cause tremendous amount of pain for her. I understand as a parent they want to do everything they can to help her, i would do the same too. But from watching Ashley’s video I assume that they demanded the platelet transfusion for her. A platelet transfusion she will need a cannula. Inserting a cannula is very distressing for children and adults, it’s painful and to add ontop of that there is a chance of infection being introduced. She is essentially bleeding from the inside and a platelet transfusion will only ‘help’ her for 12 hours or so. What I am trying to say, in a very long and winded way is that I hope that Ash and saffy are actually ‘coming to terms’ with her passing away. I mean, no parent can come to terms with it as such but what I meant is that I hope they are mentally prepared for it. I feel that they going back to the hospital asking for treatment means that they haven’t fully accepted that she will pass away.
I think they have accepted it, they don’t want to watch her bleed out, my dad haemorrhaged in front of my mum and shes had PTSD for about 11 years through it. I couldn’t watch an 8 month old bleed out, especially not through the nose that would be so distressing. And she’s got a central line so I would imagine the transfusion could go into that?
She had a Hickman line in for chemo previously so I imagine they used that.
if the hospital didn’t think a platelet transfusion was appropriate then they wouldn’t give one - it’s not really for us to question it as we don’t have all the details (I am also a medical professional)
I see what he's done stepping up and getting her a platelet transfusion. They don't want her to go that way. I admire any parent facing these circumstances,I bow down to them,I feel gut wrenching fear for them and I hope they had a restful night and today is full of love, cuddles and no suffering x
Yes I think your right they would have used her Hickman line. Having a "good death" is something that's spoken about a lot in palliative care for the elderly but it applies at any age. Treatment isn't now for prolonging life but it should be given to make her remaining time as comfortable for her and by extension her family.
We don’t use hickman lines for blood products but I guess every hospital is different. I think its human nature to evaluate these situation especially when parents are very open about their experience. Like I said a platelet transfusion won’t actually stop her from haemorrhaging completely. The cancer cells eat away at her clotting factors. Unfortunately it doesn’t necessarily mean that it won’t happen again. I also agree with previous poster than treatment shouldn’t be for prolonging life it should be about making her comfortable.
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