Tuesday, 28 May 2013

Update 21/5

Just a quick update to say all is well.  It’s been a couple of weeks since the last update and Wotsit’s doing brilliantly.  There were some tricky days at the beginning with Wotsit resisting some of the procedures but he is now completely amazing.  Doesn’t even need a cuddle when the line is going in – simply holds his breath.  Removing dressings is still a bit distressing but much improved.  It’s amazing how quickly little people adapt.

Tomorrow we will have completed the ‘induction’ phase and Wotsit has fared very well.  The steroids have been the trickiest bit by far with Wotsit begging for spaghetti carbonara (and, more recently, cabbage!) on a daily basis and wanting to eat almost permanently.  He has also been a fraction grumpy on occasions.  Particularly when he was nil by mouth until midday last Thursday – it was a v long morning.  However, the end is now in sight and he takes his last dose tomorrow.  We are all very excited!

We met the (very nice) consultant leading Wotsit’s care today.  He had the results of the bone marrow which shows the leukaemia is in remission (i.e. less than 5% of his bone marrow is now made up of leukaemia cells).  We are awaiting the MRD (minimal residual disease) results which should be available early next week.  This is a DNA analysis which is able to determine the likelihood of the leukaemia recurring.  Ultimately, this will determine his next course of treatment.  However, we begin the ‘consolidation’ phase before we have these results – we simply switch to a different plan if the MRD suggests they need to throw more treatment at the leukaemia.  The consolidation treatment we are currently expecting is a 3 week plan, comprised of 3 lumbar punctures delivering chemo into the spine and a daily dose of oral chemotherapy as well.  In comparison to the induction phase, it feels like a walk in the park.

Wotsit’s blood is also looking good.  This is great for lots of reasons.  He has more energy and has really started to properly play with his brother and friends again.  He even cycled all the way around the block today as well as walking to school twice.  He was so proud of himself – almost as proud as I was of him, I think.  Plus he is no longer neutropenic which will stand him in good stead for fighting infections.  His blood results will fluctuate as the chemo continues to give his body a battering but it’s great to know, that without a transfusion, it is starting to do its job again properly. 

So, we will hopefully be planning his return to school at some point after half term – once the community nurses have been in to school to help them understand how they can best support Wotsit.  Wotsit is excited about this but worried that Mummy won’t have anyone to talk to!

Pickle continues to be amazing.  He has handled Wotsit’s mood swings/outbursts with a maturity beyond his 6 years of age (sometimes beyond my 40 years...).  He’s been very patient and incredibly kind and he is so happy to have his brother feeling a lot more lively.  He has had his moments of being a bit grumpy/clingy/emotional/challenging but I think that’s pretty normal.

All in all, we’re really happy with how everything is going and looking forward to (fingers crossed) a little bit more normality in the weeks to come.

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