Our Story

Created by Claire 9 years ago
On 1 December 2008 our world imploded: cancer! “I'm sorry,” the consultant said, “you are not going to have a nice Christmas.” Our daughter Lilia who was two and a half at the time had been diagnosed with Rhabdomyosarcoma in the middle ear. Chemotherapy treatment started mid December where she had to stay in The Royal Marsden for 3 days every third week. She responded well. In February 2009 she started radiotherapy as well. This lasted 6 weeks Monday to Friday, and every single day she had to have a general anaesthetic. Again she responded well. Lilia's last treatment was delayed because she had fought and won against an infection of e-coli. She went into the Marsden on 16 June 2009, her 3rd birthday, and began her 9th and last planned course of chemo. The next day Lilia suffered some major seizures, for which she was put on life support and taken to the intensive care unit at the Evelina, St Thomas' Hospital. A MRI scan revealed that the cancer was in the fluid surrounding the brain and was spreading. After 3 days in intensive care we returned to the Royal Marsden for second line chemo. Once complete and having been away from home for 8 days we returned home where again Lilia appeared to improve. Three weeks later we returned to the Marsden for the next treatment; Lilia had the first day of chemo but the next day the seizures returned which meant tumour progression and nothing more could be done. We were then transferred to CHASE at Christopher's where we received the most incredible care. Lilia died there on 2nd August 2009. Lilia was so much larger than life, and her ability to smile and laugh and carry on was unbounded. Her capacity to love and be loved was much further than to the moon and back. Her last full sentence was, “I love you daddy and I love you mummy,” and her last word, the day before she died, was “Kiss”. She gave the biggest hugs and the loveliest kisses which we miss so much, but she will always be in our hearts, we will take her wherever we go and we will love her for eternity.