Charity launched: 30.01.20
Live Luke’s Dreams has been created in honour of a little boy from Enfield. A little boy who spent half of his life scooting along hand in hand with cancer. A little boy called Luke.
Forever 5 years, 5 months and 6 days young.
- To keep Luke’s memory alive and have his dreams fulfilled.
- To support children diagnosed with cancer, living in the boroughs of Enfield, Barnet and Hertfordshire, receiving treatment under Barnet Hospital's Paediatric Oncology Shared Care.
HOW DO WE DO THIS?
Firstly: We don’t want anyone to ever forget Luke, he was far too special for that. We would like him to live in the minds of all that knew him forever, and for people to live out the dreams that he can’t. We aim to achieve this with Luke’s ‘footprint stones’. Small palm-size stones, which have Luke’s footprint on one side, and a rainbow that he painted during treatment, printed on the other. Stones are available for a small voluntary donation, to anyone who knew Luke, anyone who wishes they knew him, anyone who wants to get involved and support us in keeping our beautiful boy’s memory alive. Going on holiday? Have an exciting day out planned? We are asking people to take a stone with them, to think of Luke at their destination, include him in their new memory, then to leave the stone behind – taking a photo of where it has been placed. This photo will then be pinned to our online map (shared on this website and our social media pages), so we can watch Luke’s footsteps and dreams spread around the world.
Secondly: We would like to offer our support to children who have been diagnosed with childhood cancer, who are receiving treatment under Barnet Hospital's Paediatric Oncology Shared Care. It’s a tough roller-coaster to be on, we know, and if there is any way that we can help brighten these days then we will. Whether it be with gifts to occupy long hospital stays, entertainment in hospital, memory making days out, breaks away during treatment, and many other things in-between. The support we offer is as individual as the families we offer it to.
All donations from the stones, and any other donations the charity receives, will go towards this.
WHO IS LUKE?
Sometimes in life you can be lucky enough to meet someone who makes you feel like you’ve been sprinkled in something magical. That was Luke. Alongside the cancer, pure magic swam through his veins. From the moment you met him, you would be drawn to him, he would capture your heart, and a piece of him would stay there forever. Luke, just like the meaning behind his name, lit up our whole lives. With his infectious smile, abundance of cheekiness, and the sheer happiness that permanently oozed from his pores. He was completely and utterly perfect, and if only he could have been cured with love, he would have outlived us all. I have no doubt about that.
Luke was always a bundle of energy, bulldozing and bundling his way through playgroups and playdates from the word go. He literally glowed, a picture of utter contentment. At 10 months old he began to walk, by 11 months he was running about and dancing to Frozen songs at his big sister’s 3rd birthday. Such vigour, such zest, his life was on full speed 24/7 and he loved it. But in September 2015, our lives changed forever. Out of absolutely nowhere, without any reason as to why, Luke was diagnosed with Acute Myeloid Leukaemia – blood cancer. He was just 22 months old.
Worldwide, over 400,000 children are diagnosed with cancer each and every year (Source: World Health Organisation, March 2021), and over 90,00 sadly die, yet childhood cancer it is still somewhat a taboo. It shouldn’t be. Unless there is more awareness, more research, these numbers will just continue to go one way.
Childhood cancer is a vile disease that doesn’t just turn your whole life upside down, it makes it unrecognisable. For over 3.5 years our beautiful boy endured a life with cancer at the helm, controlling and impacting every aspect of his childhood, but Luke being Luke, never let it get him down. He had this incredible ability to seek fun in everything, even the saddest of situations, to make the most of every day. It was like he knew to live each one like it was his first, and his last.
During Luke's time with cancer, he spent a total of 296 nights in a hospital bed. For 185 of these he was isolated in his room, unable to look at anything other than the four walls surrounding him, unable to even open a window, due to such a weakened immune system from treatment. At times, just catching a common cold could have killed him.
Hidden away under his clothes lived the dreaded Hickman Line. A hollow tube port surgically placed into his body – with one end resting in his jugular vein, the other end permanently hanging outside of his chest. This device brought many pro’s for administering chemotherapy and blood, but also a whole host of con’s, being a direct open link to his heart. It poses a huge infection risk. Therefore, for the 2.5 combined years that Luke’s lines were in his little body, there was no swimming, no showers and no bubble baths.
These painful years walking side-by-side with cancer saw us leave our boy on a theatre table, surrounded by strangers, as he underwent 21 general anaesthetics, 6 bone marrow aspirates, 5 bone marrow trephines, 7 lumbar punctures and had chemotherapy injected into his spinal fluid. They saw us sign consent form after consent form as we tried umpteen IV and oral chemotherapies, radioimmunotherapy, immunotherapy and targeted therapy, desperate for a cure.
Instead of going to school to learn, Luke went to hospital, where he learnt new words such as ‘platelets’, ‘neutrophils’, ‘remission’ and ‘relapse’. Instead of receiving a certificate for star-jumps in PE, he received a certificate for staying ‘as still as a statue’, having completed 15 sessions of radiotherapy.
Whilst friends and their siblings were tussling away over toys, Luke and his (then 4 year old) sister were swapping bone marrows, with his first bone marrow transplant in 2015 (his sister his donor), and a second almost three years later from a selfless, anonymous, umbilical cord donor.
Luke’s body was pumped with drugs so toxic, protective clothing and face shields had to be worn by medical staff whilst it was administered. One trial drug was so dangerous we, his parents, couldn't even be in the same room whilst it was given. Yet, it was injected directly into his veins. This same drug caused him to be radio-active for over 2 weeks, locked away in a special lead-lined room, where we had to stand behind a lead screen to speak to him, unable to touch his skin or kiss him goodnight, due to the radiation seeping out from his skin.
The years saw Luke put his beloved (rarely parted from) scooter to the side and lay perfectly still hour after hour, un-sedated, for 10 MRI scans, 14 CT scans, 19 ultrasounds, 12 x-rays, 10 ECG's and as he had 33 Nasogastric tubes passed up his nose down his throat and into his stomach. There were the 30 blood transfusions, 63 platelet transfusions and the plasma transfusion, Luke taking it all in his stride, us silently thanking all the incredible blood donors, strangers, out there for helping to keep him alive.
We spent many days fighting back tears as our boy tackled Mucositis - painful inflammation and ulcers all along the digestive tract – just one of the many horrendous side effects from the chemotherapy, and as he battled GvHD, Neutropenia, lost all of his beautiful brown hair, grew blonde hair and lost it all again.
With each treatment we learnt of new possible damaging side effects, side effects that could have impacted Luke for the rest of his life, had this vile disease not stolen him from us. We learnt that every single drug he received was developed for an adult, yet, they were his only options as a child. We learnt how massively underfunded research into childhood cancer is, and how the leaders in this world seem to turn a blind eye to the 400,000 children diagnosed each year, like they are not worthy enough to exist.
There were late night temperatures of 38+c – triggering an instant rush to the hospital to be checked over due to the high infection risk the Hickman line brings. There were tears as we dropped our daughter at grandparents and friends asleep in her pyjamas, unsure of when she would next see us again.
Over 700 IV infusions of medications/antibiotics/steroids, more than 388 samples of blood taken, and 13 shots of GCSF to kick start his bone marrow. 116 Hickman line dressing changes and 30 consecutive days attached to TPN feed, unable to eat a single mouthful of food, unable to drink due to damaged stomach lining, unable to move without being attached to an infusion pump stand 24/7, his body resembling spaghetti junction. Finger pricks, heel pricks, NPA's, catheters, oxygen tanks, 120 steroid eye drops, clinic visits, home nurse visits and 24 doses of oral medicine a day.
This monster of a disease made Luke miss his first day of school, his first sports day, his first nativity, and woke him up Christmas day morning in a hospital bed. It separated him from family, friends and his beloved sister - his best friend in the whole world, whilst he spent months away in isolation from the outside world. It made him spend the morning of his 5th birthday under general anaesthetic on a theatre table having part of his bone marrow removed, and then spend the afternoon playing with nurses instead of kids.
Luke's life was so far removed from the one he so deserved. Yet despite all of this, he always, always, wore his contagious cheeky big grin, our amazing, courageous little boy, accepting and co-operating with everything, because to him, it was normal. It wasn’t. None of it was normal. Nobody in this world should go through this, let alone a child.
This is why Luke must be remembered. This is why we want his dreams fulfilled and his footprints to cover the whole world. This is why we want to help other children going through what he did. Because he was incredible. The children fighting cancer are incredible. They don't ask for this, they do nothing wrong, they have no choice. Childhood cancer can happen to anyone. Religion, race, wealth, they are all completely and utterly irrelevant. Childhood cancer does not discriminate against a single child.
Our aim at Live Luke’s Dreams is to support these children, their families, inject a bit of fun into their days, be it with gifts, days out, breaks away. Anything that can bring some light into these dark times. If these families need help with anything, we would like to be able to offer it to them, and we hope that you will support us to do so.
When a child is diagnosed with cancer in North London, they will be primarily treated at a specialist oncology hospital, such as: Great Ormond Street & UCLH, but, they will also be seen and cared for by the Paediatric Oncology Shared Care Unit at their local 'shared care' hospital. To begin with, we will be offering our support to the oncology children who are receiving treatment at one of the above primary hospitals and who are under 'shared care' of Barnet Hospital. Children local to Luke. As the charity grows, we hope to be able to reach out to the oncology children under the 'shared care' of North Middlesex Hospital too.