Supporting families of children and young
 people with cancer in the East Midlands

At the start of 2021 Storm’s family started noticing a difference in their little boy.

“He went from happy, chilled and sleeping 12 hours a night to uncomfortable, grumpy and lots of broken sleep,” explains mum Amy.

Amy then noticed that her then 16 month old son was struggling to pass urine which doctors put down to a UTI and prescribed antibiotics.

Unfortunately the antibiotics didn’t work and Storm was getting progressively more uncomfortable.

After being admitted to Leicester Royal Infirmary he was given an ultrasound scan.

This was the day they found the tumour in his bladder. I just broke down in tears, my poor baby.

Storm in hospital

Storm’s family found out he had a rare type of cancer called a Rhabdomyosarcoma and he quickly began a course of chemotherapy.

“Storm has coped so well with all of his treatment,” said Amy.

“He’s had to go through so much – nine rounds of intense chemo and 29 sessions of proton beam therapy. He has done the lot, bursting with energy and a big smile on his face. I’m amazed by the resilience of kids.”

Storm’s family, which also includes Dad Levi and three older siblings, have been supported by PASIC.

Storm and his sister

“PASIC have given us financial grants and also told us about a holiday we could have which was amazing for us all.

We’ve also been on PASIC trips to the pantomime and Santa steam train. It was so nice to have the chance to do normal family things. Stuff you take for granted before a cancer diagnosis.

PASIC trips also gave the family chance to meet other families facing childhood cancer. Some of which Amy had already connected with on Instagram, where she shares updates on Storm’s journey on her account @_storms_journey_

“We loved meeting the other oncology families and it’s so important to meet others going through the same. It can be so lonely, especially with Covid and being in lockdown. We weren’t allowed to mix in hospital so I’m really grateful through PASIC and Instagram we were able to meet other families like ours.”

Thankfully, Storm is making great progress with his treatment – “He’s almost finished all of his maintenance chemotherapy and he will have a scan very soon to make sure everything is clear. If it is we can have the Hickman line out and ring the bell for good!”

I would say to anyone at the beginning of their cancer journey to stay strong. These kids are truly amazing and they bounce back so quickly. Cry when you need to and don’t be afraid to talk to people about how you’re feeling. Your kids will feel whatever you’re feeling so be their strength and they will be yours.

Storm in the sea in dry suit