Freddie

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When Freddie was 8 years old, he became very unwell with tonsillitis. His symptoms got progressively worse, including sinusitis, hay fever and severe sleep apnoea. His family noticed that the palate inside his mouth was extremely enlarged so they took him to A&E, after which he was sent to Great Ormond Street Hospital (GOSH) for surgery to drain and remove what they initially thought was a cyst.

After surgery the Consultant told the family that the cyst was actually a mass and it had been sent for biopsy and the oncology department would be in touch. Freddie’s Mum Charmaine said,

“At this point everything changed. We thought after surgery, everything would be fine, and we couldn’t understand why we needed oncology. We stayed in hospital for a couple of days to recover and Freddie seemed back to his normal, cheeky self, running around with no symptoms. However, a week later he started to show some symptoms, losing weight and not long after, we were told that Freddie had cancer. Everything was a blur after that.”

Freddie was diagnosed with rhabdomyosarcoma nasopharyngeal, an aggressive soft tissue cancer, situated at the back of the nasal area towards base of skull. Surgeons had removed the majority of the tumour, but a little bit remained, so Freddie went back into hospital to have a Hickman line inserted, starting chemotherapy two days later.

“Freddie went through 9 rounds of chemotherapy and 7 weeks of daily intensive radiotherapy at GOSH and UCLH due to the aggressive nature of the tumour. It was during this time that we met the Spread a Smile team. Freddie met therapy dogs, singers and artists and he particularly loved Abi, the graffiti artist. She would write his name and he would colour it in and she showed him how to do spray art and use acrylic art. He absolutely loved it and it helped to distract him from his treatment so much. He was in a trance with it and carried on with one-to-one sessions with Abi online to learn even more. Art is his therapy, and he loves doing an art club with Spread a Smile along with his siblings every week.

“On the first day we went to UCLH for proton beam therapy we met Marina, one of the Spread a Smile artists. Freddie had to wear a mask during his treatment, and it was an incredibly scary thing for him. Marina told us that she could paint his mask and Freddie created an A3 sketch of what he wanted on it. He drew so many things and Marina literally put everything on the mask for him. It was amazing.

“It took a huge amount for Freddie to put the mask on. The whole process of Proton Beam Therapy (PBT) and fitting the mask is really scary. It’s restrictive and not fun at all. But for Freddie, being able to design something for the mask and have his say in what it looked like changed that for him. It became more fun and less scary. When Freddie was given his mask, he was mesmerised by it. Marina was there too, and they chatted about what she had done. She had replicated his art and thoughts so well and it was very special. It helped change how he saw the mask and helped him to accept it. He couldn’t wait to phone his family to show them and tell them what was on it – all the little things he liked.

“He didn’t mind wearing his mask once it was painted and enjoyed talking with other children about what they had on their masks. He was so proud to show it to people. We now have it home and it is a prized possession on his desk which he proudly shows to everyone who comes in. His mask was his protection, and he was proud of what he had been through.”

“As a Mum it was traumatic watching Freddie have the mask put on as it is so big, and they have to clip it into place around the bed. But seeing it looking so special and personalised made things a little easier. Marina is amazing and an inspiration, just to think how she created something so accurate and perfect for Freddie. It made a difference to our lives.”

After Freddie’s initial chemotherapy and radiotherapy, Freddie started maintenance chemotherapy to pick up any remaining cells, managed through weekly visits to GOSH and daily oral chemotherapy at home.

“Throughout all of it, Spread a Smile has been there for the whole family and it’s wonderful. It was such a hard time for Freddie’s siblings as it’s easy to feel on the outside of everything he is going through and is happening. It is scary for them with us not being around all the time. Spread a Smile helped to bring us all together through enjoy a very special afternoon tea at Mildreds which we went to as a family. We all got to go to London together, somewhere the kids hadn’t been to before and the charity gave us such a happy, amazing time as a family.

“Spread a Smile also sent Christmas Hampers packed full of gifts for all of the children which we saved to open in January as Freddie had been so ill over Christmas. It was wonderful seeing the kids open them together, enjoying themselves. It was such a lovely moment, and we so appreciate everything that Spread a Smile has done for us and Freddie.

“Spread a Smile made an extremely difficult time a little bit easier. They brought a smile to Freddie’s face – to all of our faces. We really can’t thank them enough.”