Thank youA jungle animals quilt arrived for my brave little tiger, James, and it is beautiful. He is 8, has Down Syndrome and is part way through a 2 and 3/4 year treatment programme for leukaemia. Here he is snuggled up on the sofa with his little sister. Thank you to everyone who stitched it and to Marie for the beautiful card. It truly is a wonderful thing that you do. We will treasure it. Thanks. X
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BiographyJames is a very happy little chap, with an infectious laugh and a cheeky smile. He also happens to have Down Syndrome. So many things in life are more difficult for James but the rewards are far greater!
He started in a mainstream school just after his 5th birthday and was enjoying going to school. He had a nasty bout of mouth ulcers just after his 7th birthday (we spent one night of our holiday in hospital) and started Year 2 a bit under the weather. One day I was asked to collect him from school as he was unwell. I had noticed a slight rash and a few unexplained bruises a day or two earlier, and both were getting worse. I went from work to school to our GP within half an hour. We were then asked to go to the Paediatric Ward at our local hospital to have a blood test. The following morning James was diagnosed with leukaemia and we were transferred to Birmingham Childrens' Hospital, where we later found out he had ALL. It was his sister's 2nd birthday. We didn't get to see her.
James really struggled through the initial part of his treatment, with horrendous side effects from the numerous chemo drugs, including steroid induced diabetes. He was terrified of the ear thermometer at first, but over the last year he has grown up in so many ways and is so brave. He spent the first 5 months unable to walk, after being bed bound for 7 weeks. Despite numerous hospital admissions for infections, he finally completed the first 4 phases of his treatment and was confirmed as being in remission. James joined the Beads of Courage programme and during that first year he endured an amazing 189 blood draws, 138 doses of chemo, 11 lumbar punctures, 7 bone marrow aspirates, over 20 general anaesthetics, 31 blood or platelet transfusions and 111 nights in hospital. He also had 29 NG tube insertions (they are meant to last for a month, but they kept coming out when he vomitted) and surgery to have a gastrostomy inserted.
At the end of November 2015 he started his long term "Maintenance" phase, which lasts for 88 weeks (August 2017, by which time he will be 10). It includes daily chemotherapy, monthly doses of Vincristine with 5 days of steroids and quarterly lumbar punctures. His treatment is temporarily on hold as he recovers from yet another infection round his gastrostomy stoma. We are hoping that he can start slowly returning to school in a few months.
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