Leon’s story: “You’ve never been in that situation, so you don’t know what to do”

“You learn how to walk because you’ve never been in that situation, so you don’t know what to do.”

Leon, 3, was diagnosed with Wilm’s tumour in November 2020 after his Mum, Kasia, spotted a lump while he was having a bath. Other than the lump, Leon had been fine so the diagnosis came as a huge shock to his family.

Due to the pandemic, Kasia booked a private appointment because she didn’t know how long it would take to be seen by the GP. Their doctor immediately referred for them to be seen at Maidstone hospital, just in case.

After a few tests, Leon was later referred to another hospital to have an ultrasound and CT scan. The doctor couldn’t confirm, but said he suspected it to be a Wilm’s tumour.

“They were asking me questions like whether his appetite had gone down, whether he was constipated, whether he is lacking energy but he was absolutely fine, there was nothing that concerned me about him

“It was quite scary, because it made me think how long has this thing been growing inside of him and I didn’t see it.”

The results of the ultrasound later confirmed that Leon sadly had Wilm’s tumour.

“I still had the hope it was not what they said it is. Then seeing Dr Angelini on Friday in Royal Marsden for the full diagnosis and full plan. That was really emotional, it was tough.

“Knowing it’s happening to Leon [was hard] we are his parents, we are his rock, we kind of had to pull ourselves back to together.”

Straight away, they were given a treatment plan for Leon. He had six weeks of chemotherapy at the Royal Marsden before going in for surgery to remove the tumour.

“The surgery was quite stressful for me, waiting for him. I think it took about three and a half hours. My husband was with me – they wouldn’t let him into the ward but in the main building he was ok to be with me.

“They called me on the pager but he had rung the wrong beeper. Leon was already there but they weren’t supposed to call me yet because he was still asleep so I saw him in a state, straight after the surgery. I had jelly legs and I nearly fainted, I had to sit down and asked nurses for water because I couldn’t bear seeing him in that state.”

After surgery, Leon went on to have another 27 weeks of chemotherapy.

Throughout his treatment, Leon’s Mum had to stop working to be able to be with him.

“I had no choice but to leave my job, it was a part-time job so the income wasn’t great but still it was additional income so we saw the impact of this.”

Their Young Lives vs Cancer social worker, Shelly, was able to support their family throughout Leon’s treatment, especially helping with the financial impact of cancer and Kasia having to stop working.

“Shelly told me about all the options that I had being in this situation like Leon’s disability allowance or carer’s allowance, she explained to me step by step pretty much what to do, when to do and how to do. That was really helpful because these applications were really overwhelming and I wouldn’t really have known how to approach them.”

Kasia also received a lot of emotional support from Shelly as well. When Leon was first diagnosed, Kasia was pregnant with their second child but sadly, after a few weeks learnt that she had miscarried. She was juggling the emotions of caring for Leon, after being told he had cancer, alongside losing her baby, which was extremely difficult.

“When I found out that I miscarried I was broken inside and I just felt like I need to find a psychologist or therapist or whoever could help me so in this sense, Shelly also helped me because she referred me to the psychology team at the Royal Marsden. The fact that I could talk to her, whenever she called it wasn’t just a chit chat talk but she spent time on the call with me. That was really helpful.”

Now, Leon has finished treatment and is back home with his Mum and Dad. He has started gradually going back to nursery and is enjoying seeing all of the other children.

While they are pleased to be home, the impact of what has happened over the past year is a lot to process for the family and they are gradually getting used to being away from hospital.

“I feel relieved but I feel strange because I feel locked into those eight months of our life…it’s not like you can just close the doors and nothing happened and go back to where you left eight months ago, it’s not like that.

“As I was learning how to walk into this new world of having Leon having chemotherapy, I’m just learning how to live now after this.”