[senco-forum] child with leukaemia

My son had cancer aged 11 so although all cases are different I can tell you
what helped us.  First of all is the terrible fatigue that the treatment
causes.  This meant lots of time off school with some work to be covered at
home - not all of it obviously - just enough to do on 'good' days.  I'm sure
that there must be some involvement with CLIC - cancer and leukaemia in
childhood.  They are nothing less than fantastic and we had a fab nurse who
came in to school and talked to teachers and to the rest of his class and
explained exactly what was wrong with him and the treatment he had had, why
he had no hair, why he sometimes had a tube stuck up his nose etc etc.
This was brilliant as it took the fear and misconceptions away from the
other pupils - you know how their imaginations work overtime.  There were no
TAs at his school so I was allowed to go in to class with him when he was
finding it difficult to keep up to take notes for him and then help him at
home.  Give mum lots of your time if possible, she will be very anxious,
especially as he is so young.  My son had his brother in school to act as
his protector and spokesman but perhaps a 'named person' who this little
chap can go to if he suddenly feels tired and overwhelmed without having to
explain everything - they could have a sign or a codeword.  Academically my
son was tracked closely by a neuro ed psych who logged how far he was
behind, which cognitive functions were suffering i.e. short term memory, how
school could help and so on.  At the time I thought it was quite a mission
for him, for us, and for the school given that he could die at any time but
in fact he didn't die and now all those official reports have been brilliant
at uni in securing him a note-taker in lectures, (he is partially deaf and
lecture halls are very different from classrooms) extra time, a buddy and so
on.  I think you have hit the nail on the head when you said be guided by
the parents - there is no text book for this as one day all will be fine and
the next day there will be a life threatening infection - blue lights all
the way to paediatric oncology and three days later they are back in school
again! It's a rocky ride.  Oh yes and get the school nurse closely involved
in this as when they have low blood counts they have to avoid other kids
with things like chicken pox, live polio vaccinations and such like.  Good
luck.  
Ally

-----Original Message-----
From: senco-forum-bounces at lists.becta.org.uk
[mailto:senco-forum-bounces at lists.becta.org.uk] On Behalf Of
lucy.jeffreys2 at ntlworld.com
Sent: 02 February 2007 19:11
To: senco-forum at lists.becta.org.uk
Subject: [senco-forum] child with leukaemia 

A boy with leukaemia has just joined our Year 1 class.  He's missed a year
of schooling and is obviously likely to have periods of absence.  His
treatment has just finished, for now.

I'm going to meet with Mum next week, with the class teacher.  Has anyone
any experience of what is the best and most supportive way to help the
family - the best start being to be guided by them.

I'm aware of some of the guidance/legislation for education of sick children
but want to do the best we can.

Many thanks.  

Lucy Jeffreys

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