childhood cancer

childhood cancer

Friday, September 23, 2011

How did we get here?

OK.  Where to start.  The idea of this is to give me a mechanism to document some of the main things my family is going through, some of the issues we are dealing with, the worries and concerns we have, questions we have, and as we find the answers to them, to get them noted down too.

A lot has happened over the last six or seven weeks, and we have a tough year ahead (give or take a few months, from what we understand).  I don't have the energy to cover everything from the beginning right now, but will make sure I do eventually.  So, I will start from where we are today, and gradually fill in how we have got here.

My son, Luke, is almost eight months old.  Tonight he is in hospital.  My wife is staying with him.  They have been there all week, and will probably be there all of next week too.  Today has been one of the slightly more normal days of recent weeks - I had a meeting in Suffolk this morning, went to see them in hospital for a couple of hours, then had a meeting in Peterborough.  Nothing too scary has happened to Luke today, so I haven't spent too much time at the hospital, but have spent all day worrying about him while I haven't been there!  On my mind right now is a bone scan he is having tomorrow afternoon.  It isn't expected to show anything, but is the last place the doctors need to look in is little body, and the results are crucial to what comes next. 

Luke has childhood cancer.  So far it is diagnosed as an undifferentiated spinal sarcoma (in other words, he has a tumour in his spine, but tests have not been able to classify specifically what type of cancer he has).  We found this out four weeks ago today.  Luke had been unwell with non-specific symptoms for a few weeks.  Having manoeuvred through the health system to a terrific paediatric consultant at our local hospital, over the period of a couple of days Luke stopped being able to move his legs.  Our consultant spent some time examining Luke, and decided we needed an MRI, and should choose between Addenbrooke's and Great Ormond Street.  For various reasons we chose Addenbrooke's, and a couple of days later Luke had his scan.  First thing next morning, a team of doctors entered his room to tell my wife that the scan showed a tumour within his spinal column, which would have been putting pressure on the spinal cord and was stopping his legs moving.  They needed to operate that day.  Tomorrow's scan is to look within his bones, which is the last place to check and see if the cancer has spread, or if we are just dealing with a primary tumour.  We have already had a big scare with the cancer appearing to have spread to Luke's liver - and the prognosis shifted significantly in the wrong direction while that was thought to be the case.  Fortunately his liver is clean, as is everywhere else (touch wood). 

This week's trip to hospital was meant to be in order to have the bone scan on Monday, and to commence chemotherapy on Tuesday.  It hasn't worked out as planned, though, as Luke picked up an infection late last week through his hickman line.  This showed itself on Sunday as a really high temporature, admittance to our local hospital and the start of around two weeks of antibiotics to clear the infection.  His hickman line has had to be removed, and until the oncologist is sure the infection is gone, chemo is not an option. 

Over the last month we have had so many ups and downs (mainly downs, if I am honest).  It really is a real life rollercoaster.  We have been wrestling with so many questions.  This isn't to pour out emotions to any great extent, as what we are going through is ultimately a very personal thing for my family.  This is for me to log what is happening and when, to give me a way to keep some sort of order and record (my mind is a bit all over the place at the moment), and to write down what questions and issues we are facing from a practical perspective.  The sort of things which have come up so far include:

- How do I work effectively while all this is going on?  We have a big mortgage to pay, and I cant expect to keep being paid while taking lots of time off.
- My wife was due to go back to work in January when Luke is a year old.  Should she still do that?  Can we afford for her not to?  If we can't afford it, what do we need to do in order to make it affordable?
- We have been told the treatment will probably take around a year, during which Luke will be very susceptable to illness at various points.  That possibly/probably means no baby classes, or interacting with other children to any great extent over those periods - but my wife also gets a lot out the classes and meeting other mums and breaking up the days.  Is there anything that can replace these things but be done at home?
- What practical things do we need to do to give Luke the best chance of beating his illness?

There are countless other things which will come back to me as we move forward with this.  I don't mean the unanswerable 'why is this happening to my little boy' - although I ask myself that question many times a day.  And I don't really mean the medical questions which our consultants can deal with - although obviously the answer to questions like 'what are the likely side effects of the chemotherapy' will in themselves lead to other questions on how we need to deal with it.  I guess ultimately it will be our manual for living through what we are embarking on.  I have looked and looked and haven't really found what I need, so will do it myself.  Having said that, there is lots of useful material out there on the internet, from MacMillan etc. 

Enough rambling for tonight.  I need to be up early to get to the hospital before 8am.  I might not be sleeping much at the moment, but I at least need to try.  I will establish some sort of order and fill in a bit more of the detail and issues we have thought of so far another day.

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