Ethan's Journey of Smiles is a Special Named Fund at CCLG raising funds for research into philadelphia positive acute lymphoblastic leukaemia (PH+ALL).
Ethan was nine years old when in January 2021 he was diagnosed with PH+ALL.
His mum Claire shares his story.
On 31 December 2020, our world was turned upside down. Before this, Ethan hadn't quite been himself for a couple of weeks, starting with a sore leg on his ninth birthday on 6 December. And though this eased, he was becoming a little more tired than usual. We put it down to a busy month, with his birthday, Christmas and early mornings to see what his elf had been up to through the night.
As a whole, he wasn’t poorly, but I started to question his paleness, along with his tiredness. When Christmas Day came, we had a great morning, but as the day went on, he lost the excitement of it all. He needed a nap, while he was also sick and couldn't manage his Christmas dinner.
On 30 December, I could see he had a sore leg again, and though he never complained, he was struggling to get off the floor. I managed to get an appointment with the doctor that day, but no alarm bells rang, though he suggested we get an X-ray on his leg and some bloods taken. However, there seemed no great rush and he said it could be up to a fortnight due to the holidays.
Thankfully, we got both done the next day, 31 December.
That evening, as we started to organise a few games and prepare party food for a fun night ahead, we received a phone call from the doctor, telling us to pack a back and head to Dumfries, an hour’s drive away.
I knew something wasn't right, and it was the worst and longest drive of my life. After arriving at the hospital, the team were quick in getting Ethan settled into a room for the night. I was taken to another room where I was sat down and told that, from his bloods, they highly suspected Ethan had leukaemia and would be transferred to Glasgow for further testing the following day.
Words will never describe how I felt. I had to explain to him why he was poorly, and had to phone his dad, Robert, who then had to explain to Ethan’s sister Sarah why we weren't getting to celebrate new year and how she'd need to sleep over with her auntie so he could be with us.
It'll be a new year we'll never forget, but for all the wrong reasons.
Once transferred to Glasgow, two hours from home, we met the consultant and her team, and were told what the plan would be. Everything was happening so quickly, with such a lot to take in. In the next few days Ethan had a bone marrow aspiration, which confirmed it was acute lymphoblastic leukaemia (ALL).
He started with the lowest regimen treatment plan for standard ALL and all was going well until unfortunately, around two weeks later, Ethan's diagnosis came back Philadelphia positive (PH+ALL). We were told this was a more difficult form of leukaemia to target, with the harshest chemotherapy treatment plan needed. We went from daily praise from the doctors and thinking we'd soon be on the countdown to home, to not knowing what lay ahead or when we would get home again.
Hearing this news, it hit us even harder than the initial diagnosis.
And, what’s more, this was all during the COVID-19 pandemic, which heightened the stress and fear of it all. As parents, we were allowed to stay with him in the ward room together, until accommodation was arranged for one of us to sleep at, with no other visitors or siblings allowed. I think it took me five weeks just to actually leave that room out of fear of bringing anything in.
The first six months of his treatment were spent in Glasgow, with Ethan undergoing high-dose treatment. His dad came up at weekends to spend time with him, allowing me to spend time in our Young Lives vs Cancer (previously known as Clic Sargent) accommodation nearby with Sarah. Unfortunately, Ethan and Sarah’s time together during this period was rare, something that was incredibly difficult for the both of them.
We’re so proud of how well Ethan has done. He's coped amazingly, even on the toughest of days. He reached minimal residual disease (MRD) negative early, and while nerves still get the better of me when waiting for the results of his monthly MRD tests and bone marrow biopsies, we never let go of hope and remain positive that he will fight and beat this.
Ethan’s always been a much-loved, easy-going little chap. He enjoys school and loves nothing more than being out playing and mixing with all his friends. They’ll never know what a difference they’ve made to him by FaceTiming and playing games online with him. It’s also lifted me, hearing them all chat and laugh together, even if Roblox sends his dad and I crazy at times!
Knowing how rare Ethan’s diagnosis is, it gave us hope to find another little girl on the same journey, 10 months ahead of Ethan. She truly inspires me as well as her mum, who's always there when I need to vent or ask advice, and to help me understand this awful disease.
I still feel I know very little about it, but I do know only 3% of all leukaemia diagnoses are PH+ and that it has had the worst prognosis. Only within the last 10 years has the protocol been updated with Imatanib, and this wonder drug has shown what can be achieved with vital research.
We believe Philadelphia needs more funding, leading us to create this fund in Ethan's name. I've always invested time into fundraising for charites close to my heart - as has Ethan, he's always enjoyed getting involved and helping me. Now, we want to raise as much money as we can for further research into Ethan's particular diagnosis and new treatments for it.
We hope to increase its 80% survival rate to the 100% that it should be, and that by finding kinder treatments, to minimise the life-changing side effects it can bring, even after treatment is complete, which no child should ever have to face.
We have lots of friends wanting to support and fundraise, so by setting up this fund, we hope it helps to both raise the vital funds needed as well as spread awareness of the signs and symptoms of childhood cancers. And, hopefully, we will be able to show support and give hope to another family who might need it one day.
Make a donation to Ethan's Journey of Smiles
Open an online fundraising page for Ethan's Journey of Smiles
Set up a regular Direct Debit donation to Ethan's Journey of Smiles
Text CCLG 5 ETHAN to 70300 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 Ethan's Journey of Smiles so that your donation is allocated to the correct fund.