Helen Ball’s daughter Emily has recently finished treatment for acute lymphoblastic leukaemia (ALL). Helen tells us about what life has looked like for her family since Emily’s diagnosis, and how nature and the outdoors has helped them.
The Henry David Thoreau quote “All good things are wild and free” has always resonated with me - I even have it framed as a picture on our kitchen mantelpiece. And it’s something I found myself coming back to more often when our youngest daughter, Emily, was diagnosed with ALL at the age of two.
Up until that point our lives were ‘normal’, if there is such a thing. Our normal involved my husband Paul and I both working full time, with our eldest daughter, Bryony, at primary school and Emily attending our lovely local nursery. I guess we were settled in the sense that each of us had our roles in family life, as well as our own hobbies and interests, and things generally all slotted together.
But Emily having cancer changed all that. When she became too poorly to attend nursery, Paul gave up his job to care for her full time, while I continued working to keep us afloat financially. And Bryony just tried her best to deal with it all. It felt like a tsunami had hit our little household while the rest of the world carried on regardless.
After the initial shock and distress of front-line treatment - worsened by a dreadful flare-up of chicken pox and extended hospital stays - we began to find a ‘new normal’, each taking on our changed roles as best we could. It wasn’t easy, but we had wonderful help and support from some utterly generous family and friends. We were also supported by the Childhood Cancer Parents Alliance (CCPA), who offered the opportunity of regular social meet-ups and events for families affected by childhood cancer.
And then, coronavirus appeared, followed shortly by the first national lockdown. We went from one tsunami into another and, perhaps worse, this one came with greater isolation.
I had to dig deep to find the inner strength to stay positive and carry on. I did so by focusing on the small things in life. At first, the most basic: one more hour of cancer treatment finished, one more medicine taken, one more lumbar puncture done, one more meal eaten. Then, with small steps, I found myself smiling when Emily smiled, inhaling with pleasure the scent from her little fuzzy head, now bereft of her golden locks. I took joy from the daftness of the girls making hats from cardboard hospital bedpans, from hearing the squeals of laughter when Bryony and Emily played together, or from lying snuggled in bed at home with them fast asleep next to me.
With growing appreciation of the things I had to be thankful for, cancer’s grip began to loosen. We began family outings – car picnics when cold and raining, outdoor picnics when warm. These became our regular weekend fixture. Sometimes we would do them locally, even in the garden, while other times we might drive a few miles away to a favoured spot. This was usually one that was quiet, with few people about. Often, it was out in the wilds of the Peak District moors.
I found I could breathe again by being able to feel the cool upland breeze on my face, the hush of the wind blowing through trees, the gentle sound of bird song and hum of bees. And, in winter, the shock of cold, hard hailstones hitting my face. As an ecologist by profession and a naturalist at heart, nature and the outdoors are fundamental to my existence – to everyone’s existence, in fact. And I’ve taught Emily and Bryony to develop a love for it.
Emily’s mobility suffered tremendously during treatment and still hasn’t fully returned. I dug out the toddler backpack and strapped her to me and we went for short walks, either from home or further afield. The girls collected leaves, feathers and pinecones. They made dens and climbed trees (well, Paul generally lifted and held Emily on the lowest branch, while Bryony scrambled higher) and they loved it. They stained their fingers and lips purple by gathering and eating blueberries and blackberries.
If all this sounds idyllic, it isn’t meant to. We constantly fretted about Emily keeping her hands and central line clean, needing regular medicines, not eating, getting uncomfortable in the carrier, and wanting to stay warm in the car while Bryony pleaded for her to get out and play. But it meant we were getting out of the house and away from the monotony of treatment, just for a few hours, sometimes even for less than an hour. But that was enough.
I was trying my best to shield our family by homeworking as much as I could, so I began to run a moth-trap in our garden, something I’d fallen out of the habit of doing. It doesn’t harm the moths – they’re attracted to its light and become captured in the collecting box below, settling to rest in the egg cartons provided before being released safely in the morning. The girls loved it, especially Emily who quickly learnt the names of many of the different moths as well as coming up with a few of her own: Snowy, Custard, Pinkie Pie.
Emily has recently finished treatment. More changes are ahead as we try to adapt to, and cope with, yet another ‘new normal’, both as a family and as individuals. The fear of relapse is ever present, the long-term monitoring of Emily’s health will continue and life for our family has been altered forever. All of us are dealing with the fallout of the past two years, with Paul and Bryony both struggling with, and being treated for, anxiety. But with each small step and with an appreciation for the here and now and the small things in life - the little things wild and free - my hope is that we can each find our inner peace.
