Serena and I have four children. Our third, Daisy, is three years old and suffers from a very rare form of cancer called Langerhans Cell Histiocytosis ('LCH'). She was diagnosed in February 2018 and has had ongoing treatment since, predominantly via chemotherapy and steroids.
Our story started when Daisy had just turned one, when it became clear that she was a sickly child. Between January 2017 and admission to hospital in November 2017, she vomited most days, had irregular & loose stools (often containing blood) and her energy levels were rock bottom. We consulted numerous gastro specialists but no one could provide an explanation for Daisy's condition and it worsened. On the 3rd November 2017 she was admitted to the Chelsea & Westminster hospital with a suspected undiagnosed food allergy and in the anticipation that we would be home two weeks later. Little did we know we would leave hospital 3.5 months later without any diagnosis or a healthy child. Daisy showed incredible strength, resilience & bravery as she spent endless nights in the high dependency unit, received regular intravenous protein infusions and blood transfusions, had almost daily blood tests (the veins in her hands, feet & arms became battered & bruised from multiple cannula insertions), weathered a bout of chicken pox, and took steroids daily. Her only form of nutrition was a high protein milk powder fed through a nasal tube. Not once did she complain or feel sorry for herself. Quite the opposite as she charmed the nurses with her cheeky sense of humour. Serena and I divided our time between Daisy's bedside - with countless visits and presents from family and friends - and caring for Daisy's increasingly anxious siblings at home. Daisy was finally discharged from hospital in February 2018. She was still acutely unwell and we were none the wiser about why. Finally a biopsy of Daisy's gut, removed in an endoscopy, was sent to Great Ormond Street for a second opinion.
My wife then received a call from Great Ormond Street's oncology department and we were booked in for an appointment the next day. Fearing the unknown, we met the brilliant Dr.Slater who professionally and empathetically explained that Daisy had LCH, a rare form of cancer. We would need further scans to determine the extent of the disease and were warned that a year of chemotherapy lay ahead. Side effects were unknown but could be severe.
Following three general anesthetics in three days, including fixing an access point 'port' (for blood tests and chemotherapy), scans confirmed that Daisy had LCH in the scalp, gut & spleen (known as multi-system LCH). Treatment would include a year of chemotherapy. Our emotions were mixed, our daughter had cancer but we had a diagnosis and fingers crossed it could now be cured.
Chemotherapy was initially administered by Great Ormond Street's incredible nurses, then later in the year at our local hospital, the William Harvey in Ashford. Daisy continued to amaze us with her bravery and cheerfulness through days spent at the hospital and weekly blood tests expertly administered by the wonderful local community nurses.
Now, after a year of treatment, Daisy lives as normal a life as she ever has done and all her blood results are normal. Despite this her scalp and a small section of her gut still shows signs of LCH. The Consultant described the outcome as second place with a c60% chance of full recurrence. If the LCH spreads and comes back, a heavier dose of chemotherapy awaits involving 4 months as in-patients at Gosh followed by another 6 months out-patient treatment. We are clinging on to her current healthy state and the 40% chance it will never come back, but aware what could be around the corner.
Research into LCH and Histiocytosis is not funded centrally by the government as it is so uncommon. A great many cases go undiagnosed or are diagnosed late (as in our case). This is what we are determined to change, in the hope that other children and families can avoid going through the nightmare we have experienced. We also want to find a way to say thank you for the fantastic medical care Daisy has received from the NHS. Histio UK is the only registered charity that raises money for medical research into LCH in the UK.
With your help we can make an enormous difference, both to Daisy (in the event of a recurrence) and other sufferers. Every penny we raise goes to the Histio UK charity. Thank you in advance for any support you can provide.