Our home ed journey has been full of life lessons over this last year and summer brought us another journey, which we weren’t quite expecting and so, this summer has been one of time spent between hospital and home, looking after our children, as our son goes through treatment for Acute Myeloid Leukaemia. He was diagnosed in June of this year and during his first round of chemo, we found out he had also been coping with Lyme Disease as well, which he had picked up probably in the last two to three years and no bulls eye rash had appeared at any point. He's now going through treatment for a stem cell transplant and we are supporting him through this.
It’s not been an easy journey and our lives have been very much focused on love, kindness, support, being there for each other and trying to keep life as normal as possible in a very unusual situation. Home education continues to be there and thank goodness for flexibility in learning and my goodness, we have learned some incredible lessons this year through life experience.
My creative streak never leaves and through this journey, it has occurred to me as a parent, that there are some practical things you can do to help to manage expectations, emotions and see the positives in this situation, whatever is thrown at you along the way.
Cancer and chemo is not what you expect, the journey brings challenges and unexpected moments of magic along the way; relationships are strengthened, friendships are formed, connections are made and life is changed forever. Everything is brought into sharp focus and you are suddenly understanding all that really matters in life. Simpler times, laughter, love. I love my children more than anything in the world and this journey so far has been sprinkled with as much magic and laughter, as it has worry and tears.
I'm working on some ideas to help change how we view this sort of experience, this 'c' word and hope to inspire others along the way. If you are reading this and are a parent of a child who has gone through or is going through a form of cancer and you'd like to offer some words of wisdom, or share a positive quote, I’d like to understand ways parents and patients are affected by childhood cancer and put together a book about ways of coping, inspiring and standing up to cancer and finding some hope along the way, combining and reflecting on our own family's journey as well. In fact, if you have a child going through this sort of journey, who might want to voice their thoughts on the reality of the situation, how they might be feeling and what they might say to others who are on a similar journey, this would also be much appreciated if that’s something they’d like to do, whether it’s how to cope with a feeding tube or what the best thing to try eating is when the chemo affects your taste buds; or it might be a new book they’ve discovered or a game they like to play to keep them occupied through the moments of boredom.
If you are interested in commenting, or sending in some wise words, advice for the newly diagnosed, some inspirational thoughts and suggestions ... please email me at firstname.lastname@example.org or comment below. You might also be interested to read the blog we set up for our son about his journey to recovery.
Thank you for your kindness and thank you for reading xxx