Personal Details

On 24th nov 2007 our 5 year old daughter paige was diagnosed with suspected leukemia and was transfered to southampton general hospital.

On the 25th Nov she was confirmed to be diagnosed with T cell ALL and was started on chemotherapy that day under the guidelines of UK ALL Regimen B. she had a single lumen line inserted on 27/11/08. our world had been turned upside down, we had only taken her to the doctors for a cough and looking pale. we were in no position to be told she had leukemia and for the first week all i could think was that my little girl was not going to make it.

after spending 3 weeks in southampton general my mind was a bit more at ease and i have to say that if it wasnt for the doctors and nurses on the piam brown ward being exceptional at what they do i dont think i would have made it this far. paige finished her inital induction treatment and was transferred to our local hospital, she was then let home for christmas my best present ever that was all i could have wished for.

it didnt last and no sooner had we celebrated the arrival of the new year and hoping it would be a good one, paige was admitted to the local hospital for a high temperature and cough and her central line was not drawing back, we found out she had an infection in her line a sort of phneumonia so all chemo treatment had to stop and she was on iv antibiotics constantly for 7 days and a blood transfusion and then was allowed home to have them administered at home.

once the antibiotics were complete and blood results came back she then started back on her treatment although we had a 2 weeks set back. by the end of jan 2009 paige had finished the steriods and the BFM consolidation and wanted to be back at school with her friends and although constantly neutropenic but not febral so was agreed with her consultant that she could go back to school on a on off basis as and when she was well enough. this was great for both me and her as i was still trying to adjust and being strong for my little girl at the same time as falling apart inside and being an emotional wreck, i have to say our family and friend support has been phenominal and wihtout them it would have been a total nightmere, so my advice is to accept help and support from them when they want to give it.

we are now on week 3 of interim maintenance no 1 and have had to stop because paihes blood levels are too low for her to continue with the treatment she has only done one week out of the last three because this keeps happening, she is due a blood test on monday 3/3/09 and they will reassess the situation after this, we are also waiting for her MRD result to come back to see one how she is doing and two if she is elligable for this trial radomisation, which i have to say i dont really understand much about the MRD thing or the randomisation but im sure it will be explained to us, so this is our story so far and i will keep this story updated as it helps me to cope by putting pen to paper as it were and writting things down.