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
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.