On the 1st December our world seemed to implode: cancer! “I¹m 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 started mid December where she had to stay in The Royal Marsden for 3 days every third week. She responded well. In March she started radiotherapy as well. This lasted 6 weeks monday to friday. 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 the 16 June 2009, her 3rd birthday. The hosptal needed a urine sample to mix the drugs, Lilia would not play ball. The next day, my wife's birthday, Lilia suffered some major seizures, they were so severe that we were taken to the intensive care unit at the Evelina, St Thomas'. A MRI revealed our worst nightmare, some or one microscopic cell had become chemo resistant, turned around and had entered the fluid surrounding the brain and now were spreading. After 3 days 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. 3 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 and that could only mean tumour progression and nothing more could be done. We were then transferred to CHASE at Christopher's. Lilia died on 2nd August 2009.

Lilia was so much larger than life, and her capacity 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 early in the morning of the 2nd August 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.

We were supported by Clic and their representative at the Marsden, Maureen O'Sullivan, throughout. We just want to give something back.

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