The diagnosis
His Mum Isabel recalls, “Nikolai started to feel unwell in about April 2007 so I took him to our local doctors as he wasn’t himself. He was losing interest in his food, crying a lot and looking pale. After several visits to the doctors, I was getting increasingly worried and asked for Nikolai to have a blood test which was refused. Nikolai continued to feel unwell and on one particularly dreadful evening in June, I called the doctors and tearfully asked if he thought Nikolai could have the dreaded “L” word. He dismissed my worries and as far as he was concerned, my son was a “well child”. Three days later, 21st June - I couldn’t stand it any longer and took Nikolai to Kingston Hospital where a blood sample was taken and whisked off to the lab and he was given a thorough physical examination. Within a few hours, I got the news that I expected and dreaded; they were 99% certain he had Acute Lymphoblastic Leukaemia.”
Meeting Rainbow Trust
The family first came into contact with Rainbow Trust when Isabel noticed some literature about the charity at the Royal Marsden Hospital. Coincidentally, their neighbour had a son who had leukaemia several years before and she had found the support invaluable. Dawn, one of the charity’s Family Support Workers was soon assigned to the family.
“Dawn has provided wonderful emotional and practical support for us. I find it very helpful when she accompanies us on hospital visits (especially in the earlier days when Nikolai would get quite distressed). Her presence gives me the chance to speak to the doctors or to leave the room for a short break, knowing that Nikolai is in safe hands and is well entertained.”
How Rainbow helped
“He bonded with Dawn on her very first visit and she clearly got the measure of him in no time at all. She’s able to back me up and support me when dealing with his difficult behaviour – especially during those horrible steroid weeks! Obviously, she isn’t able to make every hospital appointment but when she does, I make good use of her time and we will go to the supermarket together. On those occasions, Nikolai might either stay in the car with Dawn (if he’s feeling unwell or susceptible to infection because of his treatment) or he’ll go around the toy aisles with her. She’ll keep him happy and occupied, leaving me to whizz around without distractions.”
“There have been occasions, particularly when Nikolai’s immunity has been low and he has missed nursery, when Dawn has offered to come and play with him or take him to the park. They do all sorts together including: baking, arts & crafts, reading and playing board games. She is extremely gentle, patient and loving to Nikolai and during those times, I’m able to catch up with household chores and spend a bit of time with my husband and older son, Sasha.”
“Dawn and I get along well together and, in addition to listening to my anxieties and frustrations, we’ve also had some good laughs too. Her support has helped me during some very difficult times.”
