Myles' Journey

Myles' Journey Follow along with Myles' journey against Neuroblastoma and become part of Myles' Army. 🎗️💙🦁

💛🎗️ MYLES UPDATE 🎗️💛Starting with a positive… 🥰 Myles’ urine sample is back and thankfully everything is normal, which h...
24/08/2026

💛🎗️ MYLES UPDATE 🎗️💛

Starting with a positive… 🥰 Myles’ urine sample is back and thankfully everything is normal, which has put our minds a little more at ease. ❤️

As some of you may know, Myles was due to have another magic sleep 😴💤 to have his adenoids removed, grommets inserted and a hearing test to complete his assessment for cochlear implants.

After seeing how much his last anaesthetic affected him both mentally and physically, we were understandably very nervous about putting him through another one. 😔

We have to look at every aspect of Myles’ health and decide what is most important for him right now, so we have made the difficult decision to cancel his upcoming surgery. Here’s why:

❤️ We want to meet with an anaesthetist to discuss the mental and physical impact of putting a child so young to sleep multiple times, especially given how Myles has reacted to previous anaesthetics.

❤️ Myles’ heart bloods are showing that his heart is under stress. We are not comfortable putting him through another anaesthetic until this is back under control.

❤️ His heart consultant has requested that Myles has a higher dose of his heart medication three times a day, and we want to see how he responds to this and how it affects him before considering another anaesthetic.

❤️ Myles’ aggression has reached an all-time high. He has been lashing out at everyone around him, including family, and we really want to work on this and hopefully come up with a strategy to help him.

❤️ Myles has also just completed a three night home sleep study, so we are now waiting for the results of that too. 💤

🎗️ In regards to oncology, Myles is back for more tests at the beginning of September. Other than him not using his legs quite as much as normal, we aren’t too worried at the moment because he is otherwise very much back to his usual self. ❤️

We completely understand how important his cochlear implant assessment is, and it is something we absolutely want to continue with. However, right now we feel that Myles needs to be in the best possible place physically and mentally before putting him to sleep again, unless it becomes an emergency.

For now, Myles communicates the best he can using his hearing aids and sign language, which we continue to learn together every day. 🥰🤟

We know some people may wonder why we have made this decision, but as his parents, we have to look at the whole picture and do what we feel is safest and best for Myles. 💛

As always, we’ll continue to bring you all along with us on Myles’ journey. Thank you for all your continued love, support and understanding. ❤️🎗️

With love,

The Loves ❤️

💛🎗️ Myles Update 🎗️💛On Friday, Myles had his MRI with contrast. Unfortunately, with every anaesthetic he has, it seems t...
10/08/2026

💛🎗️ Myles Update 🎗️💛

On Friday, Myles had his MRI with contrast. Unfortunately, with every anaesthetic he has, it seems to be taking him longer and longer to fully recover. 😔
Myles also still has a bad water infection, so we think this may have contributed to how poorly he felt afterwards. 💛

We arrived at the hospital at 8am and didn’t leave until 5:30pm. Myles went down for his scan at around 9:30am. However, as Myles is getting older, he now understands where he is going in the hospital and what is going to happen. 💔

As we approached the room where Myles was going to be put to sleep, he started crying and trying to run away. He was begging us not to let the doctors put him to sleep. 😭 It was absolutely heartbreaking and mentally exhausting for everyone.

After a little while, we managed to get him onto the table, all of us cuddling him and trying to comfort him. The doctor put the mask on and, within seconds, he was asleep. 🥺💔

That alone was mentally exhausting, but then we had to wait. Around 1pm, the nurses got a call to go and collect Myles from recovery. With everything going on in our minds, we had forgotten to tell the doctors not to leave a cannula in Myles, as we knew he would rip it out.

When we went into the room, Myles was already awake. He noticed the cannula before we did and immediately tried to pull it out! 😳 Luckily, we spotted it just in time and held him until the doctors could remove it.

We then waited until around 4:30pm when we finally saw Myles' oncologist. The whole time, Myles was extremely sleepy. 😴

She explained that the paediatric radiologist had spent over 3 hours analysing his MRI, trying to determine whether the masses were cancerous or FNH (focal nodular hyperplasia). They have found that there isn't just one mass...there are multiple masses in his liver.

The doctors are 99% sure that they are FNH, which is obviously very positive news. 🙏💛 However, at this point, they still can't tell us with absolute certainty that it isn't cancer.

And that's the part we are struggling with. 💔
We just wanted to be told, “It's definitely not cancer.” 😔

There are definitely positives. The masses haven't grown, and Myles' other tests and results are looking good. 💛 But until we have that definite answer, we are still carrying so much fear and worry.

Myles' MRI is now going to be sent to a liver radiologist for another opinion, which we're hoping will give us some more reassurance. 🙏

For now, we wait and watch. 👀💛 If we become worried about Myles at all, we have been told to take him straight to hospital. He will also have further scans to keep a close eye on the masses and make sure there are no changes.

It's been an incredibly stressful few days, but we're trying to hold onto the positives and keep reminding ourselves that the doctors are 99% sure this is FNH. 🤞💛

Thank you, as always, to everyone who continues to support Myles and our family. Your messages, love and support mean more than you will ever know. 🥹❤️

With love,

The Loves ❤️

💛🎗 Myles Update 🎗💛We didn't get Myles' blood results back yesterday as we'd hoped, which would have put our minds at eas...
31/07/2026

💛🎗 Myles Update 🎗💛

We didn't get Myles' blood results back yesterday as we'd hoped, which would have put our minds at ease. Unfortunately, the blood sample clotted before they could process it, so it will need to be repeated.
His urine test is still being processed as a priority, so we're still waiting for those results. 🤞

Myles also has a date booked for his MRI under general anaesthetic, which will be a week today. 💙
Other than that, Myles is doing really, really well! 🥹❤️He's walking more every day and even does a little run sometimes, which is amazing to see!

His eyes are improving thanks to him wearing his glasses as much as he can manage. 👓 However, he's still really struggling in daylight because his pupils don't react to light properly. This means he can't see very well outside, causing him to fall over or walk into things. We're currently looking into different things that may help with this. ☀️

His heart and lungs are still doing well with his current medications, which is fantastic news. ❤️🫁
Myles is still having random episodes of vomiting and isn't able to keep oral food or fluids down, so he's still being fed through his gastrostomy. The Gastro team are keeping a close eye on things. If his symptoms get worse, he may need stomach surgery, but for now everything is manageable. 💛

Regarding the cochlear implants, the audiology team would like to put Myles to sleep again at the beginning of September to insert more grommets, carry out another hearing test, and possibly remove his adenoids if they're enlarged. After that, there will be a meeting where a decision will be made about the next steps. 🎧

As for school, Myles is currently struggling with the lack of routine over the holidays. When he returns, he'll remain in nursery despite being Reception age so that changes are kept to a minimum, as too much change can be very distressing for him. 🏫💛

Despite everything he goes through, Myles is still his cheeky, happy little self. 🥹❤️ No matter what life throws at him, he ALWAYS manages to keep smiling, and we are so incredibly grateful for that.
As always, we'll continue to keep everyone updated every step of the way. Thank you all so much for following Myles' journey, supporting him, and watching him grow. 💛🎗

With love,

The Loves ❤️

🎗💛 MYLES UPDATE 💛🎗Myles has been doing so incredibly well. He is growing so much, both mentally and physically, and we c...
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 ❤️

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

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

💛🎗 Myles Update 🎗💛Myles had clinic yesterday, and the amazing news is…✨ MYLES IS STILL CANCER FREE!!! ✨His scans are all...
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 ❤️

💛🎗 Myles Update 🎗💛All of Myles’ bloods are looking good from a cancer point of view 😍After speaking with Myles’ oncology...
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 ❤️

💛🎗 Myles Update 🎗💛A few things have happened since our last post, some good and some not so good. We’ll start with the n...
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 ❤️

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