Avarni-Mae’s Journey, Houghton-le-Spring (2026)

14/10/2026

🧡 AVARNI-MAE’S JOURNEY UPDATE 🧡

🧡 Some positive news, but also the heartbreaking reality of what our little girl is going through… 🧡

We are finally starting to see some signs that things are moving in the right direction when it comes to Avarni-Mae’s GVHD, TMA and VOD. 🧡

After everything she has been through, hearing that things are potentially heading in the right direction is such a huge relief. We are trying to hold on to every little bit of positivity, every small improvement and every glimmer of hope. 🧡

However, that doesn’t mean things are getting any easier for our beautiful girl. 💔

Avarni-Mae is currently on day 3 of gut rest, which means she is not allowed ANY food at all, and she is only allowed 60ml of fluid over a whole 24-hour period. 🧡

Just imagine being a child, already going through so much, feeling poorly, being poked and prodded, taking endless medications, dealing with complications that no child should ever have to face… and then being told you cannot eat and can barely have anything to drink. 💔

It is absolutely heartbreaking.

She is hungry, she is frustrated, she is upset, and quite frankly, she is completely fed up with everything. And who can blame her? 🧡

The video we are sharing alongside this update is raw, emotional and upsetting, but it is the reality of what our little girl is going through.

We share so many updates about medical results, treatments, complications and the little wins along the way, but sometimes words don’t truly show what life is like behind the hospital doors.

This video shows the side of her journey that people don’t always see. 💔

The tears. The frustration. The exhaustion. The sadness. The moments where she has simply had enough.

Because behind all the medical terminology, behind the Cancer, Bone Marrow Transplant, GVHD, TMA and VOD, behind every blood test, scan and treatment, is a little girl who just wants to feel better. A little girl who wants to eat, drink, play and live like any other child. 🧡

And as her family, watching her become so distressed and knowing we cannot simply give her what she wants or make everything better is one of the most heartbreaking feelings imaginable.

We would do absolutely anything to take this all away from her. 💔

We are incredibly grateful that things are beginning to look more positive medically, and we are praying that this continues. But we also want to be open and honest about the fact that positive medical updates don’t automatically mean our little girl isn’t still suffering.

She has been through more than anyone should ever have to endure, let alone a child, and there are days when her strength is tested beyond anything we could ever imagine.

She shouldn’t have to be this brave. She shouldn’t have to be this strong. She should just be allowed to be a little girl. 🧡

Please be mindful that the video may be upsetting to watch, but this is our reality. This is Avarni-Mae’s reality. And this is why we continue to share every part of her journey, not just the good moments.

We are holding on tightly to the hope that we are finally turning a corner and that brighter, happier days are coming for our beautiful girl. 🧡

Thank you to everyone who continues to follow, support, pray for and send love to Avarni-Mae. Your kindness means more than you will ever know.

One day at a time. One small step at a time. One little victory at a time. 🧡

Keep fighting, our beautiful Avarni-Mae. We are so incredibly proud of you, even on the days when you’ve simply had enough. 🧡🧡🧡

🧡

09/10/2026

🧡 Avarni-Mae’s Journey Update 🧡

Just a little update on our girl ✨

Avarni-Mae is still doing well, and thankfully, things are continuing to move in the right direction.

She has, however, spiked a temperature today after having some of her antibiotics stopped, so these will now be restarted to help get things back on track. ❤️‍🩹

Although this is a little bump in the road, we’re staying hopeful and focusing on all the positive steps she’s making. Things are still heading in the right direction, and we’re taking each day as it comes, one step at a time. 🤞🏼

Thank you all so much for continuing to follow Avarni-Mae’s journey, for your love, your prayers, your kind messages, and for keeping our girl in your thoughts. It means more than you’ll ever know. 🥹

Keep fighting, our beautiful girl. You’ve got this! 🎀💪🏼

One step at a time, always forward. 💕✨

🧡🧡

04/10/2026

PICU, over and out 🫶🏼✨ Smashed this chapter, and now it’s back to Ward 3 to carry on getting stronger, better and closer to home 💪🏼❤️ One step at a time!

04/10/2026

🧡 WE’RE BACK ON WARD 3! 🧡

Yesterday was a really big day for our girl — after what feels like the longest, hardest stretch, Avarni-Mae finally left PICU and made her way back to Ward 3. 🥹🧡

Walking out of PICU was such a huge milestone for us. It’s been an incredibly scary and emotional time, and we honestly can’t put into words how relieved and grateful we feel to see her back on the ward.

There’s still a long road ahead and we know we’re not out of the woods yet, but being back on Ward 3 feels like such a positive step in the right direction. 🎀

Avarni-Mae continues to amaze us every single day with her strength and determination. She has been through so much, yet she keeps fighting and showing us just how strong our little girl is. 💪🏼

Thank you, as always, to everyone who has checked in, sent messages, kept us in your thoughts and continued to follow Avarni-Mae’s journey. Your love and support means more to us than you’ll ever know. 🫶🏼

One step at a time, our brave girl. 🧡🌈

01/10/2026

🧡 AVARNI-MAE UPDATE LOOK AT HER GO 🧡

I have to share some amazing news today.
Avarni-Mae is doing SO much better.

She has had NO CPAP and NO AIRVO on whilst she has been awake all day - just sat in room air! She is only needing a little bit of support when she has a nap. After weeks of machines doing the work for her, to see her sat there just breathing by herself is incredible.

She has also started drinking again and EATING for the first time in weeks and weeks! She’s had some Wotsits and even half a Wotsit sandwich! it’s the little things like this we have missed the most.

PICU are that happy with how well she is doing that we may even be going back up to Ward 3 by the latest Monday! We just can't believe how far she has come.

She still has a way to go but today has been such a positive day and we are holding onto it so tight.

Thank you for all your love and prayers as always, we feel it all.

Keep fighting our beautiful girl, everyone is beyond proud of you. ✨💪

27/09/2026

🧡 AVARNI-MAE’S JOURNEY UPDATE 🧡

We finally have a really positive update to share on our little girl. 🥹🧡

Avarni-Mae is doing so much better! She still has a long road ahead of her, and we know there will be ups and downs along the way, but things are looking a lot more positive and we couldn’t be more proud of how far she is coming. 🧡

We have been able to wean down her ventilation settings, and we have also extended the amount of time she is spending on the Airvo (prongs). Even more amazingly, she is currently in room air on both her ventilation and her Airvo! 🥹🧡 These are such positive steps for our girl.

She did have a little blip yesterday. There was quite a bit of blood in her nappy and she was in severe abdominal pain, which was obviously really worrying for us. Thankfully, we found out that the pain was due to her catheter becoming blocked. Once the catheter was removed, her pain settled, and her heart rate and blood pressure came back down. 🧡

One of the biggest things we are noticing now is just how much more chatty she is becoming. She is talking so much more and is really starting to get back to her normal little self again. 🥹🧡 Hearing her voice and seeing her personality coming back means absolutely everything to us.

There is still a long way to go, but for now we are taking every positive step, every little improvement and every good day as a reason to celebrate. 🧡

Keep fighting, our beautiful girl. We are so incredibly proud of you. 🧡🧡🧡

21/09/2026

🧡 AVARNI-MAE’S JOURNEY — UPDATE 🧡

We wanted to give everyone an update on our beautiful girl, Avarni-Mae.

Avarni-Mae is currently fighting GVHD (graft-versus-host disease) as well as VOD (veno-occlusive disease). Her little body is going through so much right now, and she still has a lot of fluid that the doctors are working hard to manage.

She is still needing her oxygen mask to help her breathe, and it’s incredibly difficult to see her going through all of this. 💔 She is being closely monitored and cared for around the clock, and the team are doing everything they can to support her little body through this incredibly tough time.

Right now, we are trying not to look too far ahead. We are taking every hour, every day as it comes and focusing on getting through each moment with our girl. Some hours feel harder than others, but we are holding onto hope and taking comfort in every little positive moment. 🧡

Please continue to keep our precious Avarni-Mae in your thoughts, prayers and hearts. She has been through more than any little girl should ever have to face, and she is still fighting. 🎀

If we are quiet and not updating or texting people as much as usual please know that this is why.

One hour at a time. One day at a time. One breath at a time. 🧡

Thank you all for continuing to support Avarni-Mae and our family. Your messages, prayers and love mean more than we could ever put into words. 🧡

18/09/2026

🧡 AVARNI-MAE’S JOURNEY UPDATE 🧡

A little update on our girl…

Avarni-Mae is officially off the tube now, which is a huge step forward for her. 🥹🧡 However, she is currently going through withdrawals from all of the sedation medication she has been on, and unfortunately today has been a really difficult day for her.

In our opinion, she hasn’t seemed herself at all today and we’ve found it really hard watching her struggle. 💔 But the doctors seem happy with how she is getting on, and ultimately that’s the main thing. They are keeping a very close eye on her and are continuing to monitor her carefully.

They have explained to us this evening that Avarni-Mae is still one of the sickest children on the ward, so although she has made some really important steps forward, she is absolutely not out of the woods yet. They are taking everything very seriously and watching her closely.

We’re just taking each day, and sometimes each hour, as it comes. Seeing her off the tube is something we’re incredibly grateful for, even though she is having such a tough time at the moment. ❤️‍🩹

Please keep our girl in your thoughts and prayers. She still has a long road ahead of her, but she continues to fight. 🧡🦋

We still may not be updating as often as we were as we are just concentrating on getting her better for the time being.

Thank you all for continuing to support Avarni-Mae and our family. It means more than we could ever put into words. 🧡

14/09/2026

🧡 AVARNI-MAE’S JOURNEY UPDATE 🧡

Avarni-Mae has now had to be intubated and put on a breathing tube to help support her breathing and, most importantly, to give her body the time and support it needs to rest and recover. This was something we never wanted to have to see her go through, and it’s been incredibly difficult for us to process.

At the moment, her heart is working slightly harder than it normally would, so the doctors are keeping a very close eye on her. They have also found fluid around her lungs, as well as some fluid in her tummy, which they are monitoring and managing alongside everything else that is going on.

They have also carried out a skin biopsy on her rash. This is to try and find out exactly what is causing the rash and hopefully give the doctors a better understanding of what is happening with her little body, so they can make sure she gets the right treatment.

There is still so much uncertainty, and we are taking things one moment at a time. Right now, our focus is simply Avarni-Mae and helping her get through this.

We also want to say that we will most likely not be doing as many updates for a little while. Please don’t take this as anything other than us needing some time to process everything that is happening. We are exhausted, overwhelmed and trying our best to take everything in while being by our girl’s side.

Please keep our beautiful Avarni-Mae in your thoughts, prayers and hearts. 💗🙏🏼

Thank you to everyone who continues to support us, check in on us and love our little girl. It means more than we could ever put into words.

Come on, Avarni-Mae. Keep fighting, sweetheart. We’re right here with you. 💗🎀

13/09/2026

🧡 AVARNI-MAE’S JOURNEY UPDATE 🧡

Today has been a difficult day for our little girl. Unfortunately, Ward 3 were struggling to get on top of the amount of fluid Avarni-Mae was holding onto, as well as keeping her blood pressure under control. Because of this, the decision was made to move her to PICU (Paediatric Intensive Care Unit) so that she can have the closer monitoring and extra support she needs right now.

She has had some sedation today so the team could carry out some of the things they needed to do for her. Because of this, she is currently on some oxygen while she recovers. This is something she needs for the time being, and the PICU team are keeping a very close eye on her.

It’s been a lot to take in, and seeing our little girl needing this level of support is incredibly hard. But she is where she needs to be, surrounded by a team who can give her the care and attention she needs.

We’re taking everything hour by hour and hoping that with the extra support in PICU, they can get the fluid and her blood pressure under better control.

Please keep our brave little Avarni-Mae in your thoughts and prayers tonight. 🩷 She really is fighting so hard. 🎀

Thank you, as always, for all the love, messages and support you continue to show our girl. It means more than we can ever put into words. 💗

Avarni-Mae’s Journey

14/10/2026

09/10/2026

04/10/2026

04/10/2026

01/10/2026

27/09/2026

21/09/2026

18/09/2026

14/09/2026

13/09/2026

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