Saturday, September 23, 2006

The 1st Joe update was just called "Joe"


Many thanks to everyone for all your kind words, thoughts, encouragement and sympathy.

The ward Joe is on is C2, Paediatric Oncology. It has a charitable fund. Also helping us are Clic-Sargent (which provides social-work, advice and financial support), and The Sick Children's Trust (which provides Acorn House, with a family room for us round the corner from the ward, with cooking, play, relaxing and sleeping facilities: an absolute godsend as we can in theory stay there with Sammy and even entertain visitors and Joe). The ward does not allow flowers or potted plants, to help control infection. Flower money can be very usefully deployed by being sent to one the charities above. Family are buying bits and pieces, entertainments and treats! Please relay all of this to everyone at school, including the parents.

Joe's condition was diagnosed when lumps on his neck from inflamed lymph glands did not go down. Blood tests eventually showed blasts (leukemic white blood cells), and we were booked into Adenbrooke's the same day. He was at school, I was at school ! We just had to up sticks and go. He has had bone marrow samples taken under general anaesthetic, and will have this each week for 4 weeks. And then we don't know. He has chemotherapy but children are much more resilient to this and it should not make him more ill, except when he has low blood counts and feels tired and weak. Joe's leukemia is ALL: acute lymphoblastic leukemia. It is the most common form of childhood leukemia, and luckily the most treatable. The treatment regime for boys is 4 weeks intensive in hospital, then at least one day a week in hospital for six months-ish, then less often for 2 1/2 years, about 3 years in total. Good prognosis compared to other leukemias, about 80% success rate perhaps. So fingers crossed. Luckily lots of the treatment can be at N & N after initial 4 weeks. But lots to find out along the way and things can change.

Very upset and dazed, but Joe is wonderful. He is genuinely well, apart from getting a little tired as he has a low red blood count, so it's a bit like running around at altitude at the moment. He isn't complaining, but is getting a bit of cabin fever as his saline drip keeps him indoors, but he will get breaks, and hopefully quite big ones. The ward is very well set up for children: food on demand, loads of toys, games, entertainment (DVDs, videos, play station), play leaders.

Thanks to everyone for all their messages of support. We really appreciate them. It is lovely to know how highly thought of Joe and the family are. Please do not be offended if offers of help are not taken up. We have a very strong and close network of friends and family nearby. We are extremely grateful and rather humbled by the enormous sympathy and encouragement.

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