In May 2015, our beautiful little boy was diagnosed with a very rare cancer-liķe condition called LCH (Langerhan’s Cell Histiocytosis). 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 by a paediatric consultant. It wasn’t what I had expected to hear at all that day.
Only 50 kids a year get this condition in the UK. Nobody knows why, or how. It’s so rarely seen that its diagnosis is often missed by doctors for some time.
Once we had the initial diagnosis we were immediately transferred to the excellent Piam Brown paediatric oncology ward at Southampton Hospital. Within three days, our little Sebbie had been through more than any child should have to. He’d had a 48-hour water deprivation test (for diabetes insipidus), canulas, scans, prodding and poking, general anaesthetic, a central line fitted in his chest, and was away from his home and new baby brother who was only 4 months old at the time.
Sebbie’s chemo was meant to last 12 months, but his LCH kept returning, so it was extended. In the end, due to the LCH ‘reactivating’ despite treatment, he ended up having 18 months on vinblastine and prednisolone, including ‘intensive’ sessions lasting 6 weeks, which were tough. Due to another reactivation just a month later, he then went back on treatment, but this time with vincristine, cytarabine and prednisolone. He then went on a ‘maintenance’ phase for 18 months of mercaptopurine and methotrexate. This final phase was a game changer as it meant he could finally say goodbye to his ‘Mr Wiggly’ (his central line) and just take these as tablets.
Once on treatment, despite the reactivations, Sebbie’s skull tumours all disappeared, his skin and ears improved, and he got his old mop of blonde hair back. We are lucky in that reactivations first surface as skin LCH on scalp, which is an easy to spot indicator.
The LCH also damaged Sebbie’s pituitary gland, leading to a condition called Diabetes Insipidus (recently renamed internationally as Arginine Vasopressin Deficiency (AVP-D) to avoid the confusion with the more commonly diagnosed ‘diabetes’). This means he doesn’t produce enough of the hormone needed to control his wees and thirst like other people do. He has to take hormone tablets twice a day every day for life now to do that for him.
So that’s our story. My child happens to be that one in a million. Luckily our Sebbie is SO incredibly brave. He used to get frustrated in the early days that he couldn’t go to soft play or playgroup, go for a swim or dig for mud in the garden, but his immunity was low and his central line had to be protected. Life improved loads once the central line went and he could go swimming.
Sebbie is now 10 years old (at 2023) and a happy, playful boy. He’s used to taking his ‘desmo’ hormone tablets twice daily, and he still has several follow-up appointments, even now, to keep an eye on things including endocrinology, oncology, ENT, audiology, ophthalmology, psychology and neurology, but its all very ‘normal’ to us all now and we take it in our stride.
Hopefully Sebbie will avoid any more recurrences but he is OK with going back on chemo if he needs to. Part of our journey as a family has been to put Sebbie’s story into words by writing and illustrating a children’s book on LCH (‘Super Sebbie teaches LCH a lesson’, available on Amazon). We missed having an age appropriate resource at the time and it has definitely helped Sebbie, friends and relatives make sense of it all.
There are many more children around the World that are being diagnosed with LCH. All with similar stories I’m sure. LCH doesn’t have the public’s awareness, or support, like other better known childhood cancers, so please give generously to fund more research.
Fifi’s story – Paediatric Langerhans Cell Histiocytosis Diagnosis, treatment and raising essential funds for research.
Isobel’s Story by Mum & Dad Suzanne & Mike Parmenter
Living in and running your house and home when you are looking after a child on chemo. Top tips on what to do, useful products and where to buy them, and how easy it is once you get over the initial shock of diagnosis and discharge from hospital.
Intro: Oliver was diagnosed with multi system Langerhans Cell Histiocytosis when he was 20 months old, back in 2014.
The LCH had attacked Oliver’s bone, skin and gut and he started chemotherapy and had a port-a-cath fitted at Addenbrookes Hospital. Oliver had 3 different chemotherapy courses, trying different ones but the LCH was still very active and spread to his eye sockets.
In 2015 he started a clinical drug trial at Great Ormond Street Hospital, which targets the B-RAF gene in which Oliver was found to have a mutation.
Oliver is still on these medications 4 years later and we are not sure what the long-term plan is.
By raising awareness of histiocytosis in the national and local press we can reach more people. We rely on personal stories to help us engage readers around our cause and bring our stories to life.
If you are interested in sharing your story on our website or in a magazine, newspaper or on TV please send a 100-word summary of your story along with your name, contact details and a recent photo to Histio@histiouk.org. We regret that we are unable to respond to everyone, but we really appreciate you getting in touch.
Why should I share my story?
We want to help as many people as possible during their histiocytosis experience – patients, carers, families and communities. By raising awareness of what we do in national newspapers, magazines, on TV and in the local press we can reach more people.
We rely on personal stories to help us do this as they engage the reader and bring the story to life. For example, if we provide research for a newspaper showing that histiocytosis can affect people financially it has more of an impact if it’s accompanied by an emotive quote or story of someone who has been directly affected and helped by us.
Your story can encourage those who see it to get help if they are worried they have the symptoms of histiocytosis or may inspire them to donate or fundraise for us. Some people who have shared their story find it a cathartic experience. It makes them feel good to give something back.
Where would my story appear?
As well as our website, we work with a range of media from broadcasters like the BBC, national newspapers like The Times, Daily Mail and Guardian and women’s magazines like Woman’s Own and Good Housekeeping.
They all have different requirements for their stories so we would approach those which we think are most appropriate, depending on your story.
Do I have to be identified/pictured?
Yes, all of the magazines and newspaper ask that the people they interview are pictured. Some ask you to send/email them photos to use while others send a photographer to take photos.
Will I have a say over what’s written?
By sending us your story you agree to its publication on our website or on or in any publication that may collect news feeds or create editorial content.
Request by journalist for contact details will be agreed with you in advance of disclosure.
Please be aware that whilst some journalists offer to read your story before it goes to print to check facts it depends on the publication and this cannot be guaranteed.
What happens next?
The journalist will try tell you when your story will appear so you can get a copy and tell all your friends. We ask the journalists to include information about Histiocytosis UK Support’s campaigns and services and you can feel proud that you’ve helped deliver our message.
If you are interested in sharing your story in a magazine, newspaper or on TV please send a 100-word summary of your story along with your name, contact details and a recent photo to Histio@histiouk.org. We regret that we are unable to respond to everyone, but we really appreciate you getting in touch.
The views expressed are those of the writer and participants and do not reflect views and or opinions of the charity any products mentioned are available from a variety of retailers.
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