Melody Berthoud
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Reflections - 2 months after end of treatment for ALL

Melody Berthoud
Posted by
06 Apr 2016

Andrew was diagnosed with ALL in October 2012 aged 3 and finished treatment on 20th February 2016.

It has been two months since treatment has finished and I am able to reflect more on what the cancer journey has meant for our family.  Andrew was not visibly being affected by the daily maintenance chemo over the last 3 years eg being sick, hair falling out and losing the ability to walk. Also we were told to treat him like a normal boy too.  I don’t think we realised how much the chemo still affected him. Andrew’s post chemo rash is much better after two months. I hope that means that the toxins have left his body now and he is beginning to feel ‘normal’ again.

  1. Andrew is sleeping really well – he wakes naturally after 12 hours sleep now – so next week when we are back at school I will have to set an alarm clock for the first time since having children.  He has always been our small blonde alarm clock, waking regularly at 5:50am, then 6:30am. We didn’t realise how much even the maintenance chemo was affecting his sleep.  We thought it would just a steroid legacy each month.  I think he must have woken each day early feeling sick and needing to eat STRAIGHT AWAY. As well as sleeping for 12 hours each night he is sleeping uninterrupted.  He has woken at least once every night since he was born, but not anymore.
  2. Andrew is eating ‘normally’.  Towards the end of maintenance it would be impossible to tell if Andrew would eat the dinner I cooked for everyone. A meal he ate one week would be rejected the next.  He would have to leave the room as the smell of plain pasta made him retch. Even if I knew he was very likely to eat the dinner he would protest and say he didn’t want it.  I would then trick him into tasting it and eventually he would eat and enjoy it.  We knew that the steroids affected his eating and this lingered into the following week but even the maintenance chemo must have affected his taste buds.  Last Sunday we went out for a pub lunch and he ordered Spaghetti Bolognese over the Pizza which really surprised me.  He would not have chosen that 3 months ago.
  3. A friend commented yesterday whilst we were out that Andrew was much more playful.  He certainly is less clingy to me and wanting to socialise more. It is probably an affect of being more active and his legs aching less.  The monthly vincristine made his legs ache. He is able to run after his friends and actually catch up now rather than being left behind and feeling despondent.
  4. There is still some work to be done, but Andrew is definitely having less tantrums and acting less spoilt and entitled.  I would find it difficult to not spoil him as we were advised not to do and buy him the Lego figure he wanted or kids magazine etc.  Maybe it is an age thing too but Andrew is much more helpful around the house and doesn’t moan if I ask him to help with jobs like before. It is probably down to the fact that he is sleeping well and again not feeling horrid due to the daily chemo.
  5. I have spoken to a lot of families about counselling – almost everyone seems to have some form of counselling during the journey. We haven’t but I wonder if we should.  More than a few friends have described what we have gone through as a ‘traumatic’ experience. Writing out my thoughts and feelings on Facebook was my counselling, my catharsis.  Since treatment finished, writing the journey out into a book to self-publish and help others has extended this catharsis.  Now that the book is finished I needed something new to do so I have started yoga to give me some mindfulness and peace. Joseph still has his choir, singing has been excellent counselling for him. I wonder if the children need some play therapy.