Myles' Journey, Carlisle (2026)

14/04/2026

💛🎗 Myles Update 🎗💛

A few things have happened since our last post, some good and some not so good. We’ll start with the negatives so we can finish on a positive note.

Myles had a hearing test to see if his hearing had returned to baseline after stopping the DFMO (maintenance treatment). Unfortunately, it hasn’t improved and is still as bad as it was. He’s also been suffering from really bad ear infections, which have been so severe they’ve been making him vomit 😔

Positives ✨

- Oncology are happy with Myles’ bloods 😊😊😊

- Myles has been tolerating his new heart medication really well, with no problems, and is now on his full dose three times a day 💊💪
-
His hair is starting to grow back 😍

- Myles has just had his first day back at school from 11 till 2 and had a lovely time 🏫💛

We are so proud of our little superhero ❤️💙

Myles has scans next month, so we’ll continue to keep everyone updated.

With love,

The Loves ❤️

16/03/2026

🎗💛 Myles Update 💛🎗

Good news! Everything went well today! 😀

Myles is now back home and doing well on his new medication, which he’ll need to take three times a day. We also got to meet the cardiology specialist nurses, who will be there to help us with any problems or questions we may have going forward.

Myles has another appointment on Wednesday for his eyes. If we receive any results on the day, we’ll be sure to update everyone. 👀

Thank you all so much for your prayers and kind words, it truly means a lot to us. 🙏💛

With love,

The Loves ❤️

16/03/2026

Please keep Myles in your thoughts and prayers today 🙏💙

We’re on our way to the hospital so Myles can be observed while he takes his very first dose of heart medication. We’re praying that he tolerates the medication well and that he’ll be home safe later today with no need for a hospital stay. 🙏

As always, we’ll keep everyone updated on how today goes.

With love,
The Loves ❤️

01/03/2026

💛🎗 Myles Update 🎗💛

We now have a plan in place for Myles’ maintenance treatment with DFMO, a medication used to help prevent his cancer from returning.

Unfortunately, it’s been confirmed that Myles has more hearing loss, so we have to pause the DFMO and follow protocol.

👉 Within the next week, we’ll travel to Newcastle to have his hearing aids turned up as much as possible. He’s becoming very frustrated with not being able to hear, which is heartbreaking to see. 😔

👉 Over the next 30 days, he’ll stay off DFMO and be put to sleep again to have new grommets fitted and another hearing test.

There’s a 50% chance his hearing could improve now the medication has stopped. If it does, he can restart DFMO at a lower dose. If not, he’ll need cochlear implants and won’t be able to continue the treatment.
On top of this, he’ll also be starting new medication for his mild chronic heart failure. We’re praying this goes smoothly with no side effects. 🙏

Despite everything, Myles still spends most of his days smiling and laughing. He amazes us every single day. 💛✨

He is still cancer-free, and we pray that continues forever. 🎗

We’ll keep everyone updated.

With love,

The Loves ❤️

26/02/2026

💛🎗 MYLES UPDATE 🎗💛

Key Information:

• Myles’ oncology consultant has had to stop his maintenance treatment (DFMO) due to hearing loss.

• His hearing has worsened - he has lost most high-frequency sounds and some low-frequency sounds.

• He has mild heart impairment.

• NO CANCER FOUND ON THE MRI!!!!! 🙌💛🎉

It’s been a long two weeks for our family. We haven’t posted an update because we’ve been taking time to process all the information we’ve received, and if I’m honest, we’re still struggling. 💔

On the 16th, Myles became unwell with a stomach bug. By the 18th, we had it too. What lasted 24 hours for us lasted a whole 7 days for Myles. He was vomiting so much, but thankfully he’s now starting to feel better. 💛

On Monday, Myles had his MRI to check there was no cancer and to look at his optic nerve. He also had his ears checked and had a hearing test.

We were extremely anxious about the hearing test. We had noticed Myles seemed less responsive to our voices, and we knew that if he had lost more hearing, they would stop his maintenance treatment, as that’s the protocol.

Sadly, we were right.

Last night, we received a phone call from Myles’ oncology consultant telling us to stop treatment because his hearing has worsened. 💔

The treatment felt like a safety net for us, as it helps stop cells from multiplying and forming a tumour. Now, we wait. Tomorrow, the audiologist and oncologist will meet to decide what happens next, and then we’ll be informed. 🙏

Today, Myles had a heart check up. We were told he has mild heart impairment and will need to start new medication for his heart.

Since the MRI, Myles has really struggled from being put to sleep. He was extremely tired and sore, especially as they had difficulty accessing a vein. Now he tells us every day:

“No more magic sleep.”

“No mask.”

And it’s absolutely heartbreaking. 💔

As always, we’ll keep everyone updated.

With love,

The Loves ❤️

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 ❤️

Myles' Journey

14/04/2026

16/03/2026

16/03/2026

01/03/2026

26/02/2026

07/02/2026

22/01/2026

08/01/2026

06/01/2026

05/01/2026

01/01/2026

25/12/2025

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