Myles' Journey, Carlisle (2026)

29/07/2026

🎗💛 MYLES UPDATE 💛🎗

Myles has been doing so incredibly well. He is growing so much, both mentally and physically, and we couldn't be prouder of him. ❤️

He has had lots of appointments since our last update, and we'll be posting about those very soon. Unfortunately, today's appointment didn't go as we had hoped.

Today, Myles was in clinic for his routine blood tests, scan and urine tests. Everything was going really well until he had his scan, where they discovered a liver lesion. We were then asked to wait while the team spoke with Myles' consultant and compared it with his previous scans.

They found that the liver lesion was actually visible on his last scan too, but it has become more noticeable now. We were then called in to speak with his consultant, who explained that, at this stage, they can't tell us whether the lesion is cancerous or not.

They believe it could be one of two things:
💛 FNH (Focal Nodular Hyperplasia), a benign liver lesion that can develop after intensive cancer treatment due to scarring.
💔 Or our biggest fear... a relapse.

Myles' consultant has reassured us not to panic. She said that because Myles is doing so well, and because the cancer spread so aggressively last time, she would expect him to be extremely poorly by now if it had returned. However, until he has an MRI with contrast, we simply can't know for certain.

His urine and blood tests have been marked as urgent, and they will be putting him to sleep for the MRI as soon as they can get him booked in. So, for now... we wait. 💛

Some of his blood results have already come back and we've been told they're reassuring. The main result we're waiting for should hopefully be back tomorrow. 🤞

We're holding on to the fact that Myles is still very much his cheeky, happy self. 💙 But we can't help worrying that our whole world could come crashing down around us at any moment.

Please keep Myles in your thoughts and prayers while we wait for more answers. 🙏💛

Myles also has an ophthalmology appointment tomorrow. After that, we'll do another update about all of his other health issues and how things have been going recently.

Thank you all so much for your continued love, support and prayers. They truly mean the world to us. ❤️

With love,
The Loves ❤️

30/06/2026

💛🎗 MYLES UPDATE 🎗💛

Myles has been doing really well, and his talking has come on so much! 🥹💛 We are so proud of him. ❤️

Since our last update, Myles has been to Middlesbrough for some tests regarding his cochlear implants. He did amazingly well during the assessments! 🌟 He managed really well with the tests he was familiar with. However, when it came to some of the new ones, he did struggle, and we had to stop because he became too upset. Since then, with the help of his Teacher of the Deaf, we've been practising those extra tests at home so that he's more familiar with them before his next appointment next week. 🤞🎧

Myles also saw his cardiologist, who is really pleased with how he's doing and has said his heart medication is working well. ❤️😁

We also took Myles to see his respiratory consultant, who is happy with the progress he's making. They're going to arrange some home sleep studies because he's been gasping in his sleep. 😴💙

Yesterday, we saw the eye consultant, who confirmed that Myles' eyes are still not responding to light. This wasn't a surprise to us, as whenever we take him outside, even when it's only a little sunny, he really struggles to see anything. ☀️👓

They also told us that his left eye is struggling significantly. He now needs to wear his glasses full-time, and over the next three months he'll begin patch therapy. This means they'll cover his stronger eye to encourage his weaker eye to work harder. This is going to be very challenging for Myles because the vision in his left eye is so poor that he'll hardly be able to see while the patch is on. Because of this, he'll need round-the-clock supervision. Thankfully, this is something he already has due to his complex health needs and severe learning difficulties. 💛

As always, we'll continue to keep everyone updated. Myles is due to see his oncology consultant at the end of July for tests and scans, and we'll share another update once we know the results. 🤞🎗

Thank you all for your continued love, support, and prayers. They truly mean the world to us. ❤️

With love,

The Loves ❤️

20/06/2026

When we were asked if we could help with a video for our local hospice, we were more than happy to do so ❤️.

They have supported our family so much throughout Myles' journey. With everything Myles has been through, it was incredibly hard to even think about leaving his side. However, knowing he would be cared for by trained nurses and doctors really put our minds at ease. 💙

When we saw how lovely and homely the hospice was, and experienced just how kind, caring, and compassionate the staff were, we knew he would be in the very best hands. 🏡✨

It also gave us the opportunity to spend some much-needed quality time with Cameron and Louisa while getting a little respite ourselves. ❤️

This is the video we made for the charity. We will always support them in any way we can because of everything they have done for us and our family. 🙏💙

Thank you for all that you do. 🌟

01/06/2026

🎗️💛 Myles Update 💛🎗️

Myles has had a lovely half-term, spending lots of quality time with family and friends. 🥰

We recently had a phone call with his cochlear implant support worker, who explained how the process will work moving forward.

Jon and I are feeling very nervous about this. We were told that if Myles is approved for bilateral implants, the surgery will likely remove any hearing he has left. We know that isn't a lot, but it is still something very important to him. 💛

This also means that while Myles is recovering from surgery, he will be completely unaided for at least 7-10 days. We know how difficult this will be for him, and the thought of it is quite scary. However, as always, we will do whatever is best for Myles and support him every step of the way. 💪💛

This month is a big one, with appointments scheduled with most of Myles' consultants. As always, we will keep everyone updated. 🏥📅

We hope everyone had a wonderful half-term! ☀️

With love,

The Loves 💛🎗️

07/05/2026

💛🎗 Myles Update 🎗💛

Myles had clinic yesterday, and the amazing news is…

✨ MYLES IS STILL CANCER FREE!!! ✨

His scans are all looking good, and his bloods are looking good too! We’re just waiting for the urine test results to come back now. 💪💛

We are so incredibly proud of our little superhero, he truly is amazing 👏🦸‍♂️

Myles has his barium swallow next Friday (stomach X-rays to see why he is still vomiting). As always, we’ll keep everyone updated with the results. 🏥💛

Thank you all so much for the continued love, support, and prayers. ❤️

With love,

The Loves ❤️

22/04/2026

💛🎗 Myles Update 🎗💛

All of Myles’ bloods are looking good from a cancer point of view 😍

After speaking with Myles’ oncology consultant, we’ve now had the outcome from the team meeting where they discussed his hearing and whether he should return to his maintenance treatment.

Chemotherapy has caused most of the damage to Myles’ hearing. Although DFMO has also had some impact, the hearing loss he already has is considered severe. Because of this, we can confirm that Myles will continue his maintenance treatment at half the dose, starting his first dose tonight 💊

Due to how much his hearing has been affected, Myles has now been referred to the cochlear implant team, who will assess and look into possible implants for him 🎧

Myles will have scans in May, along with his usual clinic appointments. As always, we’ll keep everyone updated 💛

With love,

The Loves ❤️

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 ❤️

Myles' Journey

29/07/2026

30/06/2026

20/06/2026

01/06/2026

07/05/2026

22/04/2026

14/04/2026

16/03/2026

16/03/2026

01/03/2026

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