Myles' Journey

Myles' Journey Follow along with Myles' journey against Neuroblastoma and become part of Myles' Army. ๐ŸŽ—๏ธ๐Ÿ’™๐Ÿฆ

๐ŸŽ‰๐Ÿ’™ Happy 4th Birthday to my little hero! ๐Ÿ’™๐ŸŽ‰This time last year, we could only wish to have you home for your birthday an...
15/10/2025

๐ŸŽ‰๐Ÿ’™ Happy 4th Birthday to my little hero! ๐Ÿ’™๐ŸŽ‰

This time last year, we could only wish to have you home for your birthday and that wish came true. Not only do we get to celebrate another year of your life, but we also get to celebrate you still being cancer free! ๐ŸŽ—๏ธโœจ

Words could never describe how much you mean to us. You are a true fighter, stronger than anyone Iโ€™ve ever met! Iโ€™m so proud to be your mummy.

๐Ÿ’ช You fill my heart with endless joy and happiness every single day. ๐Ÿฅฐ

This year alone, youโ€™ve already achieved so much:

๐Ÿฅ ๐Ÿ‘ฉโ€โš•๏ธYou got through all your treatment and are now in remission from Stage 4 cancer!

๐ŸŒฟ You learnt to walk again! No matter how many times you fell, you always got back up and tried again.

๐Ÿ—ฃ๏ธ You found your voice, and even if not everyone understands your little words, we do. And we love every single one of them.

๐ŸŽ’ You started nursery!

๐Ÿฆฝ You upgraded your wheelchair, because you no longer need the extra support! Your body is growing as strong as your mind!

Every goal your amazing team sets, you smash right through it. The strength you carry in your heart is truly incredible. You are our very own superhero. ๐Ÿฆธโ€โ™‚๏ธ๐Ÿ’–

I canโ€™t promise there wonโ€™t be tears today, but I can promise theyโ€™ll be tears of happiness. We are beyond blessed to have you as our son. ๐Ÿ’ซ

Cameron and Louisa worked so hard last night decorating the house with all your favourite things, they canโ€™t wait to show you all their hard work! ๐ŸŽˆ๐ŸŽ‚

๐Ÿ’™ Happy Birthday, beautiful boy. We love you endlessly.๐Ÿ’™

๐Ÿ’›๐ŸŽ— MYLES UPDATE ๐ŸŽ—๐Ÿ’›This Wednesday, Myles turns 4!!! ๐ŸŽ‰๐ŸŽ‚โœจThis is such a HUGE milestone! This time last year, we werenโ€™t eve...
13/10/2025

๐Ÿ’›๐ŸŽ— MYLES UPDATE ๐ŸŽ—๐Ÿ’›

This Wednesday, Myles turns 4!!! ๐ŸŽ‰๐ŸŽ‚โœจ

This is such a HUGE milestone! This time last year, we werenโ€™t even sure weโ€™d get to celebrate his 4th birthday. ๐Ÿ’” But here we are...his first birthday cancer free since his very first one! ๐ŸŽ—๐Ÿ’ช๐Ÿ’›

Myles, we cannot wait for you to open your presents and for all your family to sing Happy Birthday to you! ๐ŸŽ๐ŸŽถ

I canโ€™t wait to see you surrounded by love, laughter, and everyone who adores you. ๐Ÿ’•

This is a BIG DEAL! Our brave little warrior is about to turn FOUR!!! ๐Ÿฆ๐Ÿ’›๐ŸŽ‰

With love,

The Loves โค๏ธ

๐Ÿ’›๐ŸŽ— Myles Update ๐ŸŽ—๐Ÿ’›This week has been tough, mentally and physically.Life with a child in remission from stage 4 cancer i...
09/10/2025

๐Ÿ’›๐ŸŽ— Myles Update ๐ŸŽ—๐Ÿ’›

This week has been tough, mentally and physically.
Life with a child in remission from stage 4 cancer is scaryโ€ฆso scary. Everything always seems to come back to CANCER.

We are beyond thankful that our beautiful boy is in remission ๐Ÿ™, but we canโ€™t help wishing he never got cancer in the first place. Because once cancer enters your life, the thought of it never truly leaves. ๐Ÿ’”

Myles hasnโ€™t been feeling well ๐Ÿ˜” heโ€™s fighting a chest infection, an ear infection and severe pain in his arm from his fall. Whenever something happens, a sniffle, a fall, a cough, a virus. Our minds instantly go to the darkest place: what if itโ€™s back? The fear never really leaves us.

โ“ Why is Myles walking that way? Could it be a tumour?

โ“ Why did he sleep an extra 20 minutes today? Is that the cancer making him tired?

โ“ Why is he being sick? Is it back?

Every little thing makes us question:

๐Ÿคง Coldโ€ฆ or cancer?

๐Ÿค’ Virusโ€ฆ or cancer?

๐Ÿ˜ด Tiredโ€ฆ or cancer?

We are exhausted and scared. Even in our sleep, nightmares chase us. I still hear doctorsโ€™ voices in my head:

โ€œHeโ€™s not responding.โ€
โ€œHeโ€™s not responding to pain.โ€

They shout his name, and Iโ€™m helplessโ€ฆthereโ€™s nothing I can do. That moment will haunt me forever, and I never, ever want to be in that place again.

This post is to highlight what life is like with a child in remission. You may be out of the fire...but it still burns. ๐Ÿ”ฅ

With love,

๐Ÿ’ž The Loves ๐Ÿ’ž

๐Ÿ’›๐ŸŽ— Myles Update ๐ŸŽ—๐Ÿ’›Mylesโ€™ first week at school went really well! ๐ŸŒŸYesterday was tough however, and he became very upset w...
03/10/2025

๐Ÿ’›๐ŸŽ— Myles Update ๐ŸŽ—๐Ÿ’›

Mylesโ€™ first week at school went really well! ๐ŸŒŸ

Yesterday was tough however, and he became very upset when he realised that when he goes to school, Mummy and Daddy donโ€™t stay with him. ๐Ÿ’” He got so overwhelmed that he was sick, but the amazing staff were right there to comfort him and helped him feel safe and happy again. ๐Ÿ™๐Ÿ’›

Sadly, Myles has another ear infection which has affected his balance. Yesterday, he took a bad fall and broke his collarbone ๐Ÿ’”. Because of his cancer treatment, his little bones are more brittle, which makes injuries like this more likely.

Right now itโ€™s lots of painkillers, rest, and endless cuddles for our brave little warrior. ๐Ÿ›Œ๐Ÿงธ๐Ÿ’ช

With love,
The Loves โค๏ธ

๐Ÿ’›๐ŸŽ— MYLES UPDATE ๐ŸŽ—๐Ÿ’›Today was a HUGE milestone for our brave boy...Myles went to nursery all on his own without me or Jon!...
29/09/2025

๐Ÿ’›๐ŸŽ— MYLES UPDATE ๐ŸŽ—๐Ÿ’›

Today was a HUGE milestone for our brave boy...Myles went to nursery all on his own without me or Jon!! ๐Ÿฅนโœจ

Weโ€™ve never been apart from him before, and honestly the thought of it was so scary ๐Ÿ’” but his new school has been absolutely incredible, supporting us every step of the way as Myles begins this new journey. ๐ŸŒŸ This week, a nurse will be with him to finish training his teacher on Mylesโ€™ gastrostomy care, which gives us so much peace of mind. ๐Ÿ’‰๐Ÿ‘ฉโ€โš•๏ธ

Myles absolutely LOVED nursery! ๐Ÿ’›

Meanwhile, we couldnโ€™t sit still and missed him like crazy, but deep down we know heโ€™s ready to begin his nursery adventure, and it makes it so much easier knowing his teachers are simply AMAZING! ๐Ÿ™Œ

With all our love,

๐Ÿ’– The Loves ๐Ÿ’–

๐Ÿ’›๐ŸŽ— Myles Update ๐ŸŽ—๐Ÿ’›Just a little update from yesterdayโ€™s appointmentsโ€ฆ๐Ÿ‘‚ The hearing test went better than expected! They ...
25/09/2025

๐Ÿ’›๐ŸŽ— Myles Update ๐ŸŽ—๐Ÿ’›

Just a little update from yesterdayโ€™s appointmentsโ€ฆ

๐Ÿ‘‚ The hearing test went better than expected! They managed to get a baseline for Mylesโ€™ hearing. Unfortunately, they couldnโ€™t complete the full test as his attention span ran out and he became really upset ๐Ÿ’”. But the good news is they got enough results to show that his hearing is no worse than before and he doesnโ€™t need to be put to sleep this time. Weโ€™re very happy about that! ๐Ÿ’›

๐Ÿฉบ At his oncology appointment, Myles had a urine test sent off to check for any cancer biomarkers. These results take about a week to come back, so now we wait ๐Ÿคž. Fingers crossed for clear results. ๐Ÿ’›โœจ

๐Ÿ“‹ Today, Myles has a TAFF meeting, where all the professionals come together with me and Jon to share updates on Mylesโ€™ care and discuss ways they can support us. They are truly an amazing team, and we couldnโ€™t ask for better people to be by our side ๐Ÿ’•.

๐Ÿ“ธ Hereโ€™s a picture of our strong, beautiful boy showing Stitch what heโ€™s made of ๐Ÿคฃ๐Ÿ’ช. This was taken at the MediCinema in the hospital. Theyโ€™re an incredible charity that brings a magical cinema experience to sick children ๐ŸŽฌโœจ. Volunteers collect the kids from their wards and take them to the hospital cinema, where they can enjoy a film in super comfy leather seats, or even in their hospital bed if they are too poorly. Truly amazing, and we just had to give them a mention! ๐ŸŒŸ

With love,
The Loves โค๏ธ

๐Ÿ’›๐ŸŽ— Myles Update ๐ŸŽ—๐Ÿ’›๐ŸŒ… Early start for us this morning as we head to both hospitals in Newcastle.๐Ÿ‘‚ First stop โžก๏ธ the Freema...
24/09/2025

๐Ÿ’›๐ŸŽ— Myles Update ๐ŸŽ—๐Ÿ’›

๐ŸŒ… Early start for us this morning as we head to both hospitals in Newcastle.

๐Ÿ‘‚ First stop โžก๏ธ the Freeman for Mylesโ€™ hearing test.
Because of his additional needs, this is really tough for him. He struggles to stay focused, hates being in a room with the door closed (it makes him feel trapped ๐Ÿšช๐Ÿ˜”), and if itโ€™s left open, heโ€™ll just get up and leave.

The test also has to be done without his hearing aids, which makes it even harder and very distressing. On the positive side โœจ, weโ€™ve learned more signs to communicate with him while his aids are out, which helps a lot ๐Ÿ’›. The only alternative would be putting him to sleep ๐Ÿ˜ด for the test, but that comes with its own risks. This hearing test is important, as the cancer treatment Myles is currently on can affect his hearing further.

๐Ÿฅ After the Freeman, weโ€™ll head over to the RVI for a meeting with Mylesโ€™ oncology team.

๐Ÿ™ Huge thank you to my parents and siblings for helping us get Cameron and Louisa to school this morning โค๏ธ๐Ÿ‘จโ€๐Ÿ‘ฉโ€๐Ÿ‘งโ€๐Ÿ‘ฆ.

๐Ÿ“ฒ Weโ€™ll post another update once weโ€™re home.

With love,
The Loves โค๏ธ

Today is a really special day - itโ€™s Mylesโ€™ very first settling in session at nursery! ๐Ÿ’™ We honestly couldnโ€™t be prouder...
10/09/2025

Today is a really special day - itโ€™s Mylesโ€™ very first settling in session at nursery! ๐Ÿ’™ We honestly couldnโ€™t be prouder to see him reaching milestones that, this time last year, felt like something we could only dream about.

He has fought so hard to be able to enjoy the little โ€œnormalโ€ things in life, and while it may only be a settling in day, to us itโ€™s huge. Itโ€™s a moment to celebrate just how far our beautiful boy has come.

Heโ€™ll be back at clinic at the end of the month, and weโ€™re really hoping the good news keeps coming. Every day we thank God that we still have our amazing little warrior, fighting strong and making us smile. ๐Ÿ’ชโœจ

He didnโ€™t manage to get his โ€œnursery haircutโ€ because his hair is still falling out from treatment - but honestly, Myles rocks any hairstyle! ๐Ÿ˜

With love,

The Loves โค๏ธ

08/09/2025

Myles singing his favourite song from his new favourite movie...belting the high notes! ๐Ÿคฃโค๏ธ

๐Ÿ’›๐ŸŽ— MYLES UPDATE ๐ŸŽ—๐Ÿ’›Today Myles had blood tests and a scan, and we are so relieved and grateful to say that he is still in...
27/08/2025

๐Ÿ’›๐ŸŽ— MYLES UPDATE ๐ŸŽ—๐Ÿ’›

Today Myles had blood tests and a scan, and we are so relieved and grateful to say that he is still in remission โค๏ธโค๏ธโค๏ธ

We also received some of his genetic testing results. Theyโ€™ve found a fault in one of his genes which could explain his global developmental delay. More bloods were taken today, and weโ€™ll wait for the next update once theyโ€™ve had a closer look.

Whatever the results may be, the most important thing is that our brave little boy remains cancer free and for that, we are truly over the moon!

With love,
The Loves โค๏ธ

๐Ÿ’›๐ŸŽ— Myles Update ๐ŸŽ—๐Ÿ’›Mr. Incredible's surgery went really well yesterday! His skin is quite sore and will take some time to...
08/07/2025

๐Ÿ’›๐ŸŽ— Myles Update ๐ŸŽ—๐Ÿ’›

Mr. Incredible's surgery went really well yesterday! His skin is quite sore and will take some time to heal, but Myles himself is doing AMAZING, we honestly couldnโ€™t be prouder. ๐Ÿ’ช๐Ÿ’›

Myles will be ringing the bell at the end of this month, and we absolutely canโ€™t wait! ๐Ÿ›Žโœจ
Heโ€™s been through so much and is still smiling, truly, he is INCREDIBLE!

With love,
The Loves โค๏ธ

๐Ÿ’›๐ŸŽ— Myles Update ๐Ÿ’›๐ŸŽ—Myles is still doing really well, but heโ€™s now got an ear infection and a sore line site - both side e...
06/07/2025

๐Ÿ’›๐ŸŽ— Myles Update ๐Ÿ’›๐ŸŽ—

Myles is still doing really well, but heโ€™s now got an ear infection and a sore line site - both side effects from his maintenance treatment. Bloods from Fridayโ€™s clinic looked great though, which is a big relief! ๐Ÿ˜Š

Tomorrow is a BIG day! Myles is having surgery to remove his central line. Weโ€™re so happy itโ€™s coming out, but itโ€™s always hard seeing him go under and not knowing how heโ€™ll be when he wakes up.

Heโ€™s also being weaned off gabapentin, as his team thinks it might be making his symptoms (like central sleep apnea and high heart rate) worse. Itโ€™s a tough call - we donโ€™t want him in pain, and he canโ€™t tell us how he feels, so we have to go by his behaviour. But if it helps him long-term, itโ€™s worth it.

Weโ€™re so lucky to have an amazing team behind him. Theyโ€™ve created a detailed EHCP so he can have 1:1 support, and after months of looking, we think weโ€™ve found the right nursery. Letting go, even for an hour, is another story...

Thank you all for the continued love and support. Weโ€™ll keep you posted โค๏ธ

With love,

The Loves. ๐Ÿ’™

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Carlisle

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