Demie Risby

My name is Demie, I am 18 years old from Paddock Wood in Kent, and a survivor of stage 4 Neuroblastoma.

I was diagnosed on April 15th 2005 at Maidstone hospital. The primary tumour was on my right adrenal gland with metises in my pelvis.

The main tumour was 15cm x 11cm x 11cm and crossed the midline of my body. The disease was also in the lymph nodes in my abdomen. I did not have bone or bone marrow involvement.

My treatment regiment lasted approx. 15 months and finished in July 2006 at The Royal Marsden in Sutton Surrey in which my treatment regime consisted of:

  • 1o week of induction chemo- rapid cojek, to shoring the tumour and stop further spread of the disease.

  • Stem cell harvest

  • Surgical removal of the tumour and surrounding lymph nodes. At st Georges hospital, tooting London.

  • High dose chemo- I was entered into a trial at this point. I was randomly selected to have the American regiment of CEM (carboplatin, etoposide and melphan)

  • The purpose of this trial was to see which regiment did better the American CEM or the European Bumel.

  • Bone marrow transplant using my own stem cells

  • Radiotherapy, daily for three weeks

  • 6 months of 13 cis retinal acid. 28 tablets a day taken for 14 days every month. This treatment is to mop up any remaining neuroblastoma cells

  • During all of this treatment I also had additional hospital admissions for bacterial, fungal and viral infections including hepatitis and shingles

My 5 years of NED (no evidence of disease) was in July 2011. In 2016 I was 10 years of NED. I have now been in remission for 11 years.

I am now a happy and healthy 18-year-old. I work as a lifeguard and as a waitress in my local area. I am currently also studying to be a personal trainer with the hope that in the near future I will be a level 4 cancer rehabilitation trainer working with people who have recovered from the disease. I like to travel to different countries and make the most of my life that I can.

It is an absolute privilege to be an Ambassador for Stacey’s Smiles. The work that Warren, Samantha and everybody involved in this charity do is truly inspiring. I only wish that my family was open to this when I was ill. This Charity is giving children and their families a chance of happiness through this rough time, a smile just like they made Stacey smile.

I cannot wait to help Stacey’s Smiles and you in the ongoing future.