In February 2022 Niko’s family’s, world was flipped upside down when at the age of just two years old, Niko was diagnosed with Acute Lymphoblastic Leukaemia, an aggressive type of blood cancer. Niko was admitted to Great Ormond Street Hospital (GOSH), where he received blood tests, blood product transfusions and other urgent procedures including genetic testing, bone marrow tests, lumbar punctures, blood tests, antibiotics, steroids and high intensity chemotherapy.
The family were told that Niko’s treatment plan would last at least 3 years and that it would involve 13 rounds of Chemotherapy. A long and draining future lay ahead.
By mid-March 2022, Niko’s treatment was so intense, with so many negative side effects, that he stopped walking, playing and being able to move independently. After a period of investigation and tests, adjustments to his medication, consultations with physiotherapy and special aids, Niko recovered some of his mobility, although it still isn’t 100%. It was an extremely scary and emotional time for the family. Niko continues to be very weak, gets very tired after just a few steps and his legs often just give way underneath him meaning that he falls over a lot.
There then followed other phases of treatment which once again involved a lot of hospital admissions and more chemotherapy, during which time Niko lost his hair for the fourth time. It was a relief to find out at the end of this phase that although by no means the end of the road, Niko was considered to be in remission.
Since September 2022, Niko has been having daily chemotherapy at home to try and prevent any remaining cancer cells from reproducing and taking over again. Niko visits his local hospital, Colchester General Hospital weekly for blood tests and every four weeks for IV chemotherapy and steroids pulses. He now only attends Great Ormond Street Hospital every 3 months for further checks and treatment which includes lumbar punctures and infused chemotherapy into the spinal cord and fluid around the brain.
The family first came across Spread a Smile in late Spring 2022 when a member of the hospital play team gave Niko a Spread a Smile ‘walking balloon’. Niko was having an awful day, fasting before surgery and the balloon made such a difference, lifting his spirits and giving him something exciting to focus on.
Mum Katie said, “As soon as Niko saw the balloon he started to smile. I googled Spread a Smile, as there was a sticker on the balloon, to find out more about them and got straight in touch when I saw all of the different activities they offer that I knew might help Niko. Niko started having one-to-one virtual sessions with Spread a Smile Entertainers over the summer holidays including magicians and fairies. He particularly loved the magicians who made him smile, laugh and shout at the screen every time.”
“When you are going through such a hard, draining and emotional time, seeing your child smile, even if very briefly, can mean everything.”
Please help ensure we can continue to support children like Niko and their families by donating today. Thank you.