Myles' Journey

07/02/2026

💛🎗 Myles Update 🎗💛

We are so incredibly proud of our little man and everything he’s achieved since the last update 🥰

Myles is wearing his oxygen full time at the moment. He technically only needs it while sleeping, but he doesn’t like taking it off and putting it back on, so he’d rather keep it on all the time and that’s absolutely fine with us as long as he’s getting what he needs 💨💛

Thursday was a very busy hospital day. We left the house at 8am and didn’t get home until 7pm… it was a long one!

He had a scan and it was ALL CLEAR!!!!!! 🥳✨

Then followed bloods, obs, weight and height. Bloods were all good, height is on track, and he’s lost a little bit of weight, nothing major, but we’ll be keeping an eye on it 👀

Next, Myles had an appointment with the gastro consultant. They’re organising a test to make sure his stomach isn’t paralysed due to the ongoing random vomiting. Once the results are back, we’ll sit down with the gastro doctor again to discuss next steps.

We then made our way from the RVI to the Freeman Hospital, where Myles had a hearing test. He’s already borderline needing cochlear implants; however, they couldn’t get accurate results because his grommets have fallen out and he currently has a bad ear infection 👂😞

The plan is that when he’s put to sleep on the 23rd, they’ll hopefully replace his grommets. If hearing loss is confirmed, he’ll need support with cochlear implants.

Myles did amazing. It was such a long and tiring day for him, but he gave his best at every single appointment. He truly is our little superhero ❤️🦸‍♂️

With love,

The Loves ❤️

22/01/2026

💛🎗 Myles Update 🎗️💛

We try our absolute hardest to stay positive, but sometimes it’s incredibly difficult, and honestly… we’re struggling mentally. Thankfully, we’re in therapy, but things are really hard right now, and here’s why 💔

Last week, Myles had two tests:

- 👁️ An eye test (with eye drops)
- 😴 A sleep study

The eye test results showed that Myles has definite damage to the optic nerve in his left eye. His optic nerve is pale, and we’ll know more after the 23rd of next month.

On Tuesday, we received the sleep study results. Unfortunately, Myles’ central sleep apnea has worsened. He needs to go back on overnight oxygen. Ideally, they would have liked him to use a ventilator while he sleeps, but Myles just can’t tolerate it, so we had to settle for oxygen. We were told he stopped breathing several times, each episode lasting 10–15 seconds, and when this happened, his oxygen levels dropped too low 😞

Before cancer, Myles was a healthy little boy. Aside from not reaching all his milestones, he was doing well. Now, after surviving cancer, he has:

• Central sleep apnea
• Potential chronic heart failure
• A non-functioning left kidney
• A non-functioning spleen
• Profound hearing loss in both ears
• Possible limited vision in his left eye
• Autonomic nerve dysfunction
• Global developmental delay (this may have been present before cancer, we’re unsure)
• He still can’t tolerate food orally and is PEG fed
• He vomits randomly most days

We hold on tightly to the fact that he is still cancer-free 💪💛 and that he faces everything with the biggest smile. But it’s so hard not knowing what the future holds for our little boy. Every appointment seems to bring more bad news, and that weighs heavily on us 😔

With love,

The Loves ❤️

08/01/2026

💛🎗️ MYLES UPDATE 🎗️💛

Oncology bloods are all OK! 🙂

Iron and liver levels are still high, so these are being monitored.

Thyroid levels are on the high end, so Myles will need another blood test to see if he needs to start another medication 💊

Myles has a sleep study next week to see if he needs to go back on overnight oxygen. The morning after, he’ll have further tests to try and find out how much damage has been done to his sight from treatment 👀
Depending on how Myles is and the results of the sight test, he may need an emergency MRI scan to check his brain.

Either way, Myles will still have an MRI in February just to be safe. This one is booked for February because he’ll need to be fully put to sleep for the scan, in the words of his consultant, “Myles is way too wild for sedation to work” 😅

Sedation has never worked on Myles, so a full anaesthetic is needed.

The blood test for chronic heart failure is back, we’re just waiting for the heart consultant to review it and get back to us ❤️‍🩹

While we wait for more results and tests, we always try to focus on the positives, and there are plenty 💛

✨ Myles wore his glasses for 20 minutes yesterday
✨ His mobility is amazing
✨ He’s now making sentences
✨ He is so funny, anyone who meets him laughs. He really is incredible 🥰

As always, you’ve been with us from the very start, and we’ll continue to bring you along with us as Myles grows, to show what life looks like in remission from stage 4 high-risk neuroblastoma 🎗️

With love,

The Loves ❤️

06/01/2026

💛🎗 Myles Update 🎗💛

Yesterday was a very long day. We left the house at 8am and didn’t get home until after 5pm! 😴

After Myles’ eye exam, we found out that the muscles and optic nerve in his left eye have been damaged due to the toxicity of immunotherapy. He has lost vision in that eye, though we’re not yet sure to what extent. He will need more tests to determine how much vision he has left.

This was the first time they’ve been able to properly examine both of Myles’ eyes due to his learning difficulties and attention span, so they’re not 100% certain if the damage is solely from immunotherapy or if it could be caused by cancer on the brain. However, Myles’ oncology consultant has confirmed that apart from his eye, he is showing no signs of a brain tumour and believes the vision loss is due to the immunotherapy. She is arranging a scan just to be absolutely sure everything is okay 🙏

Myles also needed blood tests yesterday for several reasons:

• His heart consultant requested bloods to check for chronic heart failure after something seen on his heart scan
• His iron levels needed checking after being high on his last test due to the many blood transfusions he’s had
• To check his thyroid and liver
• And to check for cancer

After 7 attempts, they still couldn’t get blood from Myles 😔 Anyone who knows him knows he has some very strong veins in his head, so as a last resort they placed a cannula in his head. It wasn’t very nice, but it worked first time, and Myles even fell asleep while they did it 🥹💪 How strong is this boy!!!

Because the bloods were taken late, we didn’t get the results yesterday. We’re now waiting for a call from his consultant and will update everyone as soon as we know more.

With love,

The Loves ❤️

05/01/2026

Myles is all ready for a long day at the hospital today, a check-up with the eye consultant, then off to oncology for another review 💪🏥

With love,

The loves ❤️✨

01/01/2026

Happy New Year, everyone 🎉

We pray this year is good to everyone. We’re praying that Myles remains in remission and that our little family stays happy and healthy 🤍

Myles has some important appointments coming up this month, and we’ll be sure to keep everyone updated.

Thank you for your continued support of our family, it truly never goes unnoticed 💫

With love,

The Loves ❤️

25/12/2025

Merry Christmas everyone! 🎅 🎄 ⛄️

Lots of love,

The Loves ❤️

21/12/2025

Our brave warrior 💪

Today we want to share the story of Myles' Journey, a brave young boy whose journey with Stage 4 Neuroblastoma reminds us why awareness and support matter so deeply.

Myles was diagnosed with Stage 4 Neuroblastoma in December 2023 and has since undergone intensive treatment. Like many children facing high risk Neuroblastoma, his journey has involved long hospital stays, complex care and incredible resilience from both him and his family.

Myles is now in remission and continues to attend regular hospital appointments as part of his ongoing care. This milestone represents hope, progress and the strength it takes to keep moving forward after everything his young body has endured.

Stories like Myles’ highlight the reality of Neuroblastoma beyond the statistics. They remind us that behind every diagnosis is a child, a family and a future worth fighting for. By sharing these journeys, we help keep this childhood cancer visible and ensure families know they are not alone.

We are so proud of you, Myles.
Your courage and strength continue to inspire so many.

🩷🩵🤍

30/11/2025

💛🎗MYLES UPDATE 🎗💛

After a very long week of appointments we have very good news..

MYLES IS STILL CANCER FREE!!!!!

We can now relax and enjoy having Christmas at home together praying nothing gets in our way!

With love,

The Loves ❤️

21/11/2025

💛🎗 MYLES UPDATE 🎗💛

After having the flu last week, Myles has thankfully made a full recovery and is feeling much better, as are the rest of us. 💛

This week, Myles had an appointment with the eye doctors. Sadly, they confirmed that his eyes are still not responding to light. This means that when he’s outside, even the slightest bit of light makes it so he can’t see. He also has astigmatism and may be long-sighted, so he now needs glasses. 👓
This will be a trial for him because of his sensory issues, and we aren’t sure how he’ll take to wearing them, but all we can do is try our best. 💪

A huge thankyou to the lovely people at Ophthalmology in the Cumberland Infirmary for their patience and understanding. Myles has a very short attention span, and they were absolutely amazing with him, even signing to him, which I thought was incredible. 👏💛

Myles will now be referred to another consultant for further assessment, and we’ll know more once we meet them. He will also be supported by a teacher for the visually impaired, alongside his teacher for the deaf. 🧑‍🏫✨

He has also been spending a couple of hours a week at the local hospice and absolutely loves it. Everyone there is so kind and takes wonderful care of him. He’s already looking forward to going back to what he calls “the nurses’ house.” 🏡💕

Next week is a big one, full of appointments. Myles has his scans and other tests to check that he is still cancer free. He also has cardiology, ENT, physio, and the behaviour specialists. As always, we’ll update you all when we get the results. 🙏💛

With love,

The Loves ❤️

10/11/2025

💛🎗 MYLES UPDATE 🎗💛

It’s been a rough week for us 😔

Last Thursday, Myles fell poorly again with another ear infection, this time in his left ear. I’ve honestly lost count of how many he’s had over the past few months 💔 Each one seems worse than the last.

Thankfully, the doctor we saw this time was amazing 🙏 He prescribed antibiotics and ear drops, took swabs, and referred Myles to ENT for further checks.

Because ear infections are a known side effect of the maintenance drug Myles takes for his cancer, they had a look, and it seems the grommet in his left ear can’t be found, though the one in his right ear is still in place. So it definitely needs checking out 👂💊

To make things worse, once we got home from the hospital, Myles started vomiting and spiking a high temperature 🤒 Shortly after, both me and Jon started feeling really unwell too! I can’t remember the last time we’ve felt this sick. Now the whole house has come down with it. We’ve spent every day since Friday just sleeping and vomiting, it really feels like the flu 😷

And as if that wasn’t enough, Danielle's Dad is currently in hospital with fluid around his heart and a severe chest infection 💔 We can’t even visit him right now, which makes it even harder.

Please, if you can, keep us all in your thoughts and prayers as we fight through this rough patch 🙏💛

With love,

The Loves ❤️

08/11/2025

💛 A huge thank you to Alan Carr from the bottom of our hearts! 💛

Before Myles was diagnosed with neuroblastoma, we had never even heard of this terrible cancer. Since then, we’ve met so many brave little warriors also fighting this disease, some who, heartbreakingly, have lost their battle. 💔

We pray that the generous donation you’ve given to the Neuroblastoma charity will help bring us closer to a cure, so that no more families have to watch their babies suffer. 🙏

To all the children still fighting 🦸‍♀️🦸‍♂️

To all the children who have gained their wings 👼

And to all the incredible warriors living with the scars of their battles 💪

May this bring us all a little hope. 💫

With love,

The Loves ❤️