Monday, 13 May 2013

Letting the world (well, school Mums) know

I want to record this time so Wotsit and Pickle can understand a bit more when their older, should they want to.  To catch up on last few weeks, I'm posting some of the updates I've sent to friends and family. 
To the school Mums - 15/4
Unfortunately Wotsit was diagnosed with Leukaemia on Friday.  He is fine so far, just pale and tired with a few aches and pains and already a bit fed up with being prodded.  He is undergoing tests today to confirm his diagnosis which is believed to be ALL (Acute Lymphoblastic Leukaemia).  This is the most common and most treatable form of Leukaemia and the prognosis is as good as you could hope for.  His treatment will start immediately and will be chemo rather than radiotherapy.  He’s at the Royal Marsden so in very good hands.  We’ll be there for the next week to 10 days and then I think we’re allowed home if all has gone to plan.  The treatment for Leukaemia for boys goes on for 3 years and this will be mostly at the Royal Surrey, some at the Royal Marsden and some at home.  He will at some point return to school but no idea at the moment of when that is allowed to happen.  When he does return, the biggest concern will be infection control, ensuring that he doesn’t catch anything nasty that his white blood cells can’t cope with.  The school will help us all understand how we best do that at a later date.

A couple of children have asked where Wotsit is and, if you’re happy to, I think it would be useful to let them know he is in hospital and a bit poorly.  Mrs H will talk to them all in more detail later in the week once you’ve had a chance to do this. We’ve explained to Wotsit that his white blood cells aren’t working properly so he can get sick very easily and they’re also taking up too much space which means there’s not enough space for his red blood cells which is why he feels tired and is pale and achey.  He is cross with his ‘naughty white cells’!  There is a good resource which explains how the blood works if you feel it’s helpful to explain in more detail. . He will lose his hair over the next few weeks and will probably gain weight from steroids and be moody etc so we will be thinking about how we explain this to him, and to Pickle, in due course.  We haven’t done so yet and would prefer if all the children learn this together if possible at the appropriate time so that Pickle isn’t asked questions he may not yet have the answers to.

Our primary concern is to get Wotsit well and for Pickle to remain secure and stable at school.  Pickle is very much missing his little brother, they are very close.  Whilst I know that everyone will wish us well and will be keen to know how Wotsit is getting on, we would really appreciate it if you would talk to us at pick up before we have collected Pickle.

Please don’t worry about what to say when you see us!  It’s fine.  Email if you want to (it’s sometimes lonely in hospital) and phone reception is terrible.

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