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Life in Maintenance ~ one Mum’s Story

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06 May 2017

Felix was diagnosed with Acute Lymphoblastic Leukaemia in January 2016 aged 10. After seven months of gruelling treatment which involved a variety of high dose chemotherapies, steroid treatment and lumbar punctures we reached the elusive maintenance. This is what life is like for us now.

Felix was diagnosed with Acute Lymphoblastic Leukaemia on 26th January 2016 aged 10.  The diagnosis came out of the blue.  For a couple of months he had complained of pains in his feet and seemed particularly emotional.  There were also a couple of odd infections and days when he couldn’t get out of bed.  In their singularity, we simply put these symptoms down to his age, growing pains, time of year.  It was the nature of these infections that led me to ask the doctor for a blood test.  I didn't think a 10 year old boy should be getting the type of infections that he was.  The blood test took place at 8am on a bright sunny Thursday morning at the local hospital.  At 12:30pm we were called to bring Felix straight back to hospital.  At 7pm we were calling our friends and family to tell them that our son had blood cancer.


That was 16 months ago yet it seems like yesterday.  Every time I think of that day, the thoughts and feelings come pouring back like it was yesterday.  Following months of intensive treatment, Felix started maintenance in September 2016 which coincided well with the start of the new school year.  He was able to start Year 6 with his buddies; admittedly he stood out quite a bit with his steroid induced weight gain and lack of hair but he walked through the gates with bravery, courage and pride.  We haven't looked back since.


Felix now attends school full time and engages with all aspects of his education  He does have time off but this is minimal and far less than I anticipated.  Every two weeks he has a couple of hours off on a Wednesday to attend clinic, once every three months he has a Monday morning off to attend his oncology review and has occasional days off because of fatigue.  We are fortunate that his community nurse does his weekly bloods at school which barely affects his education.  He loves school and for all of us it is symbolises a sense of normality following the trauma of the first six months following diagnosis.


If you looked at Felix now, you would have no idea that he is in treatment for Acute Lymphoblastic Leukaemia. He looks like all the other kids the same age and doing all they things they do.   It’s all about the latest trainers, the latest craze and even girls!  He lives and breathes football, watching and playing whenever he can.  What people don't see is the constant worry and fear.  Each week we wait for the blood results to see if they've crashed; is he neutropenic, are his platelets low, why are they taking so long to come back, have they found something?  What people don't see is the daily chemotherapy he has to take, sometimes up to 22 tablets a day.  What people don't see is when his body is so tired he can’t even muster a smile.  What people don't see is the diet restrictions he is faced with.  What people don't see is the pain, fear and trauma he has experienced in the last 16 months.  What people do see is that he is alive and for us, that is all that matters.


All of us will be living in maintenance until April 2019.  His brother and sister will continue to fast in the evenings before Felix takes his medication to support him.  Bloods, 6MP, methotrexate and septrin will all continue to be part of our language. We will continue to adapt our work and lives to be there when Felix has an emergency admittance to hospital, to attend appointments or if the other children find it all too much.  The thing is though that we are living again, we are all living again.  We are relishing the small things:  all of us sitting round a table at meal times, invites that we can say yes to, planning for a future.  This all seemed impossible a year ago, now it feels anything is possible.

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