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In May 2015, my beautiful little boy was diagnosed with a very rare cancer liķe condition called LCH (Langerhan's Cell Histiocytosis www.histiouk.org). He was two and a half.
He had lost two kilos in two months. His left eye was partially closed from a skull tumour. His scalp was a bloody mess. His skin was covered in spots. His ears were oozing with infection. He had an insatiable thirst to the point of drinking rain water from the trampoline. He had lost his wonderful zest for life.
After almost two years of repeated GP visits, seeing dermatology and ENT at the hospital and advice from all quarters we finally got diagnosed on Northbrook Ward in Winchester hospital.
Only 50 kids a year get this wicked illness in the UK. Nobody knows why, or how. It's so rarely seen that its diagnosis is often missed by doctors for some time.
Within three days, our little Sebbie had been through hell. He'd had canulas, scans, prodding and poking, general anaesthetic, a central line fitted in his chest, and was away from his home and new baby brother. We were transferred to the excellent Piam Brown paediatric oncology ward at Southampton Hospital. Sebbie was put on chemo immediately.
Sebbie's chemo was meant to last 12 months, but his LCH kept returning, so it was extended to 18 months, including 3 sets of 'intensive' sessions lasting 6 weeks, which were hell.
Sebbie's pituitary gland has been damaged for life so he has to take tablets three times a day every day to stop his body weeing to death. His skull tumours have all disappeared. His skin now looks amazing. He now has his old mop of blonde hair back. We visit Northbrook Ward in Winchester every 3 weeks for chemo with the wonderful Dr Ian Rodd. Every three sessions we return to Piam Brown for the excellent Dr Ramya to check on progress.
Sadly, in November 2016, we finally had our 'end of treatment' consultation booked at PB. Excited, but apprehensive, we never expected the news we received. They have now found a 'flare' on his cerebellum (brain) consistent with the even rarer Neurodegenerative LCH (ND-LCH). You can find out more at https://youtu.be/NEU1u4c6jMA. Our luck has just got a whole lot worse. There is no known treatment for ND-LCH, and trials on drugs are limited due to the incredibly small number of sufferers across the world, and the unknown long term effects of the treatments that have been trialled. Sebbie is now undergoing 3 monthly neurology testing (the 'Ataxia test'), with psychological testing tbc, to pinpoint the first signs of neurodegeneration. This is likely to ultimately end with severe physical and learning disability. When that inevitable day happens, we will need to make a decision, cloaked in uncertainty, on what treatment option we take. He has now been referred to Great Ormand Street Hospital in London to the national expert in ND-LCH, and is undergoing BRAF gene mutation testing. 50 per cent of LCH patients have mutations to their BRAF gene which can be treated with mutation inhibitors, although the long term effects are unknown, and they are not thought to have any effect on the ND-LCH, just any reactivation of his LCH. Our other option now is even stronger chemotherapy.
So that's our story. My child happens to be that one in a million. Luckily My Sebbie is SO incredibly brave. He still doesn't know he's ill. He gets frustrated that he cant go to soft play or playgroup, go for a swim or dig for mud in the garden, but his immunity is low and his central line has to be protected.
In April 2016, I shared an abseil with five other Mummies from Sebbies preschool, Rainbows Playgroup. They have been amazing. They are a parent led preschool that runs in the local church. Theyve recently been awarded outstanding by Ofsted. Rainbows keep Sebbie feeling 'normal', beavering in the background to give him separate sand play, water play and snacks; being trained by the community nurse on dealing with any emergency; and being really supportive throughout.
Hopefully Sebbie will recover. There are many more children around the World that are being diagnosed with LCH. All with similar stories I'm sure. So please give generously to fund more research, and particularly ND-LCH. LCH doesn't have the public's awareness, or support, like other childhood cancers but it can be just as devastating.
Thank you xxx
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