Age 11 & Living with Leukaemia (ALL) – Day 500

When Felix was diagnosed in January 2016, I could find very little information about what his future might look like.  The doctors said that things would get easier once we hit maintenance but looking at my boy suffering from the side effects of chemotherapy and steroid treatment I found this difficult to believe.  There was one moment, about six months in when I met a mum and son at Oncology Clinic.  He was further ahead of us in treatment which, when she said, I could not believe.  He looked like any other kid.  I looked at Felix, bald and bloated through steroids and couldn’t conceive that he would ever look like or be like any other kid again.

 

This is why I feel compelled to write this piece.  It is for all parents and families who have just started this journey.  I know that all children respond differently but this is one story.  This is where we are now, 500 days in.

  • Felix has turned 11 and is now in Year 6
  • He has attended school full time since September 2016.  His attendance is 87%.
  • Absences have been because of ‘wipe out’ days when he is so tired he needs 1-3 days to recover and we have also been fortunate to take 5 ‘exceptional circumstances’ days
  • He completed his SATs tests
  • He takes part in all aspects of school including trips and has just returned from a four-night Outdoor Education residential
  • He plays football for a local football team and was top goal scorer this season
  • He has a girlfriend (he’ll kill me for this!)
  • He goes on sleepovers
  • As a family, we do everything we used to do: camping trips, days out, family events

 

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This is how ALL impacts our lives:

  • Felix has weekly blood tests.  These either happen at the oncology clinic or at home/school.  This continues to be the case even if we are on holiday and so it is arranged for either a community nurse to come to us or we go to the local hospital.  Felix had his port removed as soon as he started Maintenance and so has finger prick blood tests.
  • There have been a number of occasions when his counts have dropped and he has been neutropenic which has resulted in a chemo hold until they recover.  There has also been one occasion in maintenance when his platelets crashed and he was unable to do any form of activity or sport.  This lasted for about 2 weeks.
  • Felix has to attend Oncology Clinic every other week on a Wednesday which takes him out of school for a couple of hours but we try to do it over lunchtime.  He also has to attend an Oncology review at Southampton once every three months.
  • His entry into puberty is being closely monitored, particularly his testicles.
  • Felix has to take daily chemotherapy tablets which are adjusted according to his weekly blood results.  His current dose is alternate days 100/110% which means 10/11 mercaptopurine tablets every evening, an additional 11 methotrexate tablets on a Thursday morning and Septrin morning and evenings at weekends.  Felix independently takes his medication but does find the fact that he can’t eat an hour before the mercaptopurine frustrating at times.
  • He still has a restricted diet, similar to a pregnancy diet.  His appetite waivers because of the chemotherapy and his tastes have also changed (he no longer likes baked beans or chips!).
  • If Felix becomes ill and has a temperature we have to go straight to our shared care children’s unit to be assessed.  We are not allowed to give him paracetamol.

That said, you would never realise any of the above if you didn’t know him.

Our advice would be: take each minute, hour and day one at a time.  There will be a time again when you can look ahead, plan and enjoy.

To me, this picture epitomises how far he/we have come.  To us, this is what life is like living with leukaemia for an 11-year-old.

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Felix aged 11 diagnosed with Acute Lymphoblastic Leukaemia January 2016

 

 

 

 

 

 

 

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Blogger’s Block & Changing Times

I had Bloggers Block.  I’ve wanted to write but just couldn’t.  Writing is my therapy and the interaction gained from it does wonder for my state of mind and self-esteem.  When I don’t write I miss it terribly.  I started to get a bit desperate so put a shout out on Twitter asking for anything that might reignite the literary spark in me and sure enough, my virtual friends came to the rescue.  It was a fellow AFCB supporter who offered me this gem of advice: Start blogging about why you’ve got blogging block. Will probably then free your mind!  This got me thinking … What had changed?  Why do I feel paralysed?  Why am I stuck?  I have mulled this over the last 24 hours and then it struck me.  Things have changed and things continue to change for me, my family, my friends, my community and our society.  This period of transition has silenced me.

My blog and writing started because my son was diagnosed with leukaemia.  It gave me a platform to share my feelings, frustrations and experiences.  I felt that I had control over something; I could spread awareness, I could use writing to try to make sense of this brave new world we were in.  My son is still being treated for leukaemia but our world now, compared to that world then, has changed beyond recognition.  This time last year Felix was an inpatient on a child’s oncology ward receiving High Dose Methotrexate as part of the UK2011 trial.  On admission he would be examined, his port would be accessed and he would be taken to theatre for a lumbar puncture and a dose of chemotherapy which would be injected into his spine and brain.  He would then be taken to the ward for up to five days where he would be hydrated for 6 hours through an IV drip, then receive his chemotherapy over 24 hours and then receive further hydration until the chemotherapy was released from his 10-year-old body.  Every millilitre of fluid intake and outtake would be measured.  I remember him shuffling to the toilet with his drip stand, peeing in the bottle and me carrying it to the sluice with my gloves on because of the toxicity of his urine.  The side effects included his skin ‘breaking down’ and excruciating ulcers which required oral morphine and left him unable to eat or drink.  That is where we were a year ago.

Today he is on his Year 6 Residential trip.  He left on Monday and will return on Friday.  From spending hours, days and weeks side – by – side battling this awful disease I am now sat here and have no idea at all what he is doing.  I don’t know how he’s feeling, what he’s thinking or what he is experiencing but that’s OK.  This is my realisation, it’s OK and our story has changed.

I have always relished change much to my husband’s despair.  However, when that change is beyond your control, that is when it brings uncertainty, pain and suffering.  Our society is currently experiencing a sense of change because of the recent terrorist attacks and the imminent election.  If we recognise that it is because of change which is why we feel as we do then it somehow makes it all easier to cope with.  Change happens all of the time; nappies to potty, child to teenager, single to married, ill to healthy, leaves budding, leaves falling.  This is the circle of life and many changes go unnoticed for what they are. It is the ones which we have no control of which bring sadness, despair and uncertainty but this is the impermanence of life.

So, my realisation is that our story has changed and Mrs Brown’s Blogs will now reflect this.  It will continue to be an honest and frank account of life, family and childhood cancer but with greater emphasis on family, life and stuff.  This is a new chapter in our story and one which leaves me feeling as apprehensive as I do excited.

I hope you stick around for the next chapter – who knows what it might bring!

 

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