Cohen's Fight

Raising funds for research into alveolar rhabdomyosarcoma

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Cohen was four years old when in May 2020 he was diagnosed with stage 4 rhabdomyosarcoma, a cancer of the soft tissue.

His auntie Alicia shares his story:

Cohen’s the cheekiest little thing, whose world suddenly changed back in March 2020. He was thrust from playing at home one minute, into a world of appointments, tests and treatment. Cohen’s mum Kat was taking him up to bed when she picked him up and felt a lump on the back of his left leg. Before any of this he’d never once complained of any pain, nothing hurt him. He had no symptoms apart from this lump on his leg, nothing to indicate anything more serious.

Kat and Adrian, Cohen’s dad, booked him an appointment with the doctors, who referred him straight away to get it checked out. He got referred to the hospital to have ultra-sound, and from then on it was a massive waiting game to have different tests, like MRI scans and biopsies, at the Leicester Royal Infirmary (LRI) and Queen’s Medical Centre, in Nottingham.

It wasn’t until 19 May that Cohen was diagnosed with cancer.

Because of the COVID precautions, the worst imaginable situation became even harder. Only one parent was allowed to go into the hospital each time Cohen had a different test. He’d also have to go in two days before his appointment to have a COVID test. So, everything was a lot more difficult.

It’s really made it even more challenging. Cohen was in hospital for long periods of time, and his mum and dad were not allowed to switch over. So, whichever one of them went in, they had to stay there. It’s tough on all of them, and I think Cohen’s found that part especially difficult, being only able to see one of them for long periods.

He and his big brother Blake are inseparable, think as thieves. Cohen really looks up to him, idolising him. They’ve not been able to see each other at times, so that’s been weird for both of them too. Blake is still young himself, and with the shielding, he’s not been able to go out and do things to take his mind off it. He’s had to stay at home, to keep Cohen safe, but he’s been brilliant.

Cohen’s been at the LRI to receive treatment, where everyone looking after him has been amazing. His treatment plan is to undergo weekly intense chemotherapy sessions for 25 weeks, and he will be having radiotherapy at some point. After that he’ll be having one year of maintenance chemotherapy.

He’s got some scans coming up to determine the next step; what radiotherapy, where it will be, things like that. But, because he’s picked up different infections, his treatment has sometimes been delayed slightly.

Cohen’s so brave. When he goes into the hospital for treatment, he’s absolutely amazing and takes it all in his stride. It knocks him out for a few days but when he picks up, he’s back to normal running around and playing with Blake. We’ve all been saying that us as adults, we would struggle with things like the Hickman Line he’s had fitted. But he’s just dealt with it like it’s completely normal.

We’ve had a lot of support and everybody has been amazing. Kat, Adrian and Blake are trying to remain positive as much as they can. There’s a special therapist from the hospital that comes round to the house once a week to talk to Blake. They talk about how he’s feeling, which is really helpful.

As the wider family, we try to help them as much as we can. It’s difficult not being able to see them, but we help with shopping and things like that.

Cohen’s a crazy child, full of energy and has the funniest little personality. Any room Cohen is in, you definitely know about it! He loves anything like Super Mario and is obsessed with Toy Story. Anything his big brother plays, he will try and join in. He just loves to copy whatever Blake does.

People have been asking if they could buy something for him, and he’s been getting so many toys. He has a Nintendo Switch and Wii that he loves to play, and he’s been given a Super Mario Lego set, which he loves. He’s got so many toys; the support has been amazing.

We set up a GoFundMe page, so that instead of toys, if anyone wanted to put any money towards it, he could do things. We raised just under £10,000, which is incredible.  On the back of that, Kat and Adrian wanted to raise money to help others by supporting charities working to change childhood cancer. As a family, we ourselves were blind to the statistics, and it’s opened our eyes, really.

We’ve got many plans for fundraising events and Cohen’s excited hearing some of the things that are planned, especially those involving superheroes!

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Text CCLG 5 COHEN 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 Cohen's Fight so that your donation is allocated to the correct fund. 

100% of funds raised will go towards research into alveolar rhabdomyosarcoma.