It’s been so long since my last blog and this has been a conscious decision following Childhood Cancer Awareness Month. The response to my #ablogaday was phenomenal and thank you to everyone who contributed and all who engaged with it. What I was not prepared for was the emotional toll that came with it.
Throughout September I was inundated with blogs from friends, family and virtual friends who all wrote enlightening and inspiring pieces straight from the heart. Of course, I had to read and edit blogs where necessary, I hadn’t thought this bit through. At the beginning, it was fine but as the days went on, the rawness and honesty in these blogs started to weigh me down. It was the hurt and the pain that so many people carry round with them that hit my heart. On 25th September #ablogday stopped. In all honesty I think a was waiting for Mr Brown to contribute, and once he had my pursuit was over. I needed a holiday so I packed up my Blog and spent some time away.
I’m back with a new haircut and everything! I’m back and really looking forward to writing again. I’m back recharged and emotionally back on form. One thing that makes me so proud of Mrs Brown’s Blogs is the positive engagement that takes place and the supportive platform it offers others. This is want I now want to build on. Whilst Childhood Cancer is still part of our lives and always will be, I want to move away from it being the main emphasis of my writing. I now want to explore the myriad of parenting and family experiences that we all enjoy/despair of each day. There will of course be the added dimension that my son is in treatment for leukaemia but all families have their unique dimension. And that is what is so wonderful about us all. We can all celebrate our achievements, worries and concerns – none are more significant than others, it’s all about perspective.
I’m so pleased to be back and look forward to sharing my thoughts and feelings about the crazy and often confusing world around us. I have plans to explore behaviour as communication, our daily routines and how we goal set for ourselves and our family. I want to start to combine my emotional journey with my experience as an educator to explore the everyday nuances of life.
I hope you’ll continue to join me on this journey. I feel truly blessed to have the opportunity to be excited again – Let’s chat about and enjoy those small things!
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.