Just George is a Special Named Fund at CCLG raising money for research into rhabdomyosarcoma, in memory of George.
George was three years old, when in May 2022, he was diagnosed with rhabdomyosarcoma. George's mum, Lisa shares his story...
George (or ‘Just George’ in his words) was born a smiley, happy, active boy. He quickly learnt to love books and picked up language to compete with mummy and daddy at home. His love of vehicles, dinosaurs and space developed early and he has always had a mature ability to show empathy. My husband, David and I were proud parents, loving the kind and resilient boy George was growing up to be.
At the age of 3 (May ‘22), George was a healthy boy. Overnight a lump appeared in the temple location on the right side of his head, with no other symptoms. Following a fast process of scans and biopsies, he was diagnosed with rhabdomyosarcoma
George then rapidly entered the world of hospital life. Whole genome sequencing taught us that within his tumour was a particular gene, making it high risk. An intense package of treatment was put into place (which included nine rounds of chemotherapy, aggressive surgery and 6 weeks of daily Proton Beam radiotherapy in London).
George finished active treatment in Dec ’22. Weeks later he began maintenance chemotherapy which came to a sudden halt by May, when it was discovered he had relapsed. The tumour had returned whilst on maintenance chemotherapy and only 5 months after radiotherapy. Relapse treatment began despite the knowledge of the success rate being in single figures. In July ‘23 we learnt that the tumour had grown 25% whilst on the relapse treatment. Treatment ended. Hospital appointments reduced to almost none and we were gently passed to the local East Anglian’s Children’s Hospice for ongoing care.
On top of other common side effects from cancer treatment, George required a tracheostomy for six months. He suffered from trismus (locked jaw) and needed to be fed and medicated through a gastrostomy button. Late summer '23 he lost the sight in his right eye and a new tumour appeared on his right lymph node. George spent a lot of time in hospital, including a three-month stint across three hospitals, often isolated to his room. He braved horrendous medicine, that could only be administered orally, fought temperature spikes, COVID and chickenpox. As if hair loss, vomiting and the long list of long term side effects wasn’t enough!
George smiled and danced his way through treatment, bouncing back from the challenges, demonstrating incredible strength. He stayed so beautifully in the present, being positive, waking each day expecting to feel well. This light every day shone on our family and resonated across all who met him. He built relationships with medical and care staff, remembering their names and offering smiles and good conversation. It is fair to say he was very loved.
George had a phenomenal memory. He loved learning (particularly science, history and maths), asking curious questions and soaking up facts. September ‘23, despite the tumour progressing, the cancer spreading and high doses of pain medication, George started school. He strolled in on his first day, ready to learn.
We built a relationship with the hospice (EACH) whilst George was in maintenance, grateful for the play space they could offer him. They wrapped our family in love, care and support and were by our side when the news of relapse came and when treatment ended. They held our hands tightly during George’s final days. Like the blow of a dandelion, on the 14th October ‘23, George took his last breath. He now joins the little stars lighting up the universe.
As parents, who have had their hopes and dreams for their incredible little boy shattered, we aim to turn the negative energy from that into a positive drive to raise funds, specifically for research into rhabdomyosarcoma. We want families in the future to be offered kinder treatments for their children’s cancer and for more successful treatments to be found for rhabdomyosarcoma. If this fund can go any way to helping other families battling this horrendous disease, then George’s incredible fight would have been for something.
CCLG have supported us from day one. Their resources for families, and clinical trials they have funded, have benefited us greatly. We are proud to work alongside them, raising awareness and funds. Each year, we will mark their ‘Wear It Gold’ day and continue to fundraise throughout the year to grow the fund, in the hope it will support future research projects.
Make a donation to Just George
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Open an online fundraising page for Just George
Set up a regular Direct Debit donation to Just George
Merchandise
Research projects funded
Learning to predict high-risk rhabdomyosarcoma at diagnosis to improve outcomes for children and young people
Investigating the shape of fusion genes in rhabdomyosarcoma
Fundraising pages
Text CCLGGEORGE to 70085 to donate £5.
CCLG will receive 100% of your donation. You may also be charged for one text message at your network’s standard or charity rate.
You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for Just George so that your donation is allocated to the correct fund.