John Taylor (our dad) sadly passed away on Thursday 8th May at 0706 after being diagnosed with Langerhans cell sarcoma in March 2025.

Langerhans cell sarcoma (LCS) is a rare and aggressive form of cancer that originates from Langerhans cells, which are a type of dendritic cell involved in the immune response. Due to its rarity, there is limited evidence on the most effective treatment strategies for LCS, making it a challenging condition to manage.

John underwent 15 sessions of Radiotherapy at Mount Vernon Hospital to the three main affected areas which were his head, neck and bridge of his nose this ran from Tuesday 8th to Wednesday 30th April. Throughout this time John found the treatment very challenging and would become very fatigued, lethargic and had an extreme lack of energy and motivation as the treatment went on.

On Thursday 1st May the day after finishing his last Radiotherapy session, John woke and didn’t feel well at all and contacted 111 who in turn decided that he should be taken into hospital. John was that day admitted into Luton and Dunstable hospital onto the St Marys wing, were they continued with his morphine treatment for the pain. John was finding it extremely difficult to swallow and was therefore on a liquid diet only and struggling to talk at times.

We were told by the consultants at Mount Vernon that 7-9 days post Radiotherapy patients tend to feel at their worst but should start to improve after this time. Sadly, this was not to be the case for John and in the coming days started to deteriorate.

Johns loved ones (Ian, Julie, Kathleen, Geoff and Carol Smith) would spend time with him every day attending to all his needs.

On Tuesday 6th May, John had an appointment with his Consultant, Geoff attended this with John as he was unable to speak very much at this time. John was told at the meeting that the cancer had spread, and prognosis would be a matter of weeks.

On Wednesday 7th May, Julie (Daughter) arrived at the hospital at 0830 and spoke with the wonderful team of nurses on that morning to see how dad was doing, upon going into the room she could see a huge deterioration from the previous day. The Charge nurse came round and asked what Julie was aware of from the meeting that took place, upon relaying the information she was aware of the nurse looked at her and shook her head, at this point Julie knew there wasn’t much time left. John then spoke and just said ‘Home’, Julie asked if this was a possibility, and the nurses said they would do what they can.

Julie then contacted the people John wanted to be with him (Ian, Kathleen, Geoff and Carol) to which they all arrived at the hospital. Several consultants and palliative team members came to see John and agreed that they would do their best to get John home and this would mean withdrawing all treatment and treating only end of life pain relief to which John agreed and just said ‘home’.

The team at L&D that were on that day then went on to move heaven and earth to get John home, a hospital bed was delivered to John’s home by 1700, and John was then brought home via ambulance and arrived home at 1900.

John spent the evening and night surround by his children Ian and Julie and Kathleen, Geoff and Carol. We all talked and made John as comfortable as possible, John was able to talk at times and even had all laughing with some of the things he was saying.

Through parts of the night John was agitated at times but with the calming hand of Geoff sat by his side, talking to him and attending to his needs he settled and was very peaceful.

At 0702 Johns breathing started to change and we knew that it wouldn’t be long, and then John finally took his last breath at 0706 with those he loved around him, in his own home exactly where he wanted to be.

Johns’ diagnosis of LCS was very hard to identify due to the rarity of this cancer and we would therefore like to support Histiocytosis UK charity who is dedicated to promoting and funding scientific research into uncovering not only the causes of all histiocytic diseases, which include Langerhans’s Cell Histiocytosis and Haemophagocytic Lymphohistiocytosis, but also ensuring early diagnosis, effective treatment and a cure.

Please give what you can to help support Histiocytosis UK charity.

We, as a family would also like to thank you all for your kind words and support since hearing of John’s passing, your words have brought us lots of comfort in this very sad time.

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