Phew. What a week. Like the petals plucked from a flower in a childhood game, we’ve had a good day, not so good day, good day, not so good day, good day!
Dexamethasone has become a word I dread. The name of the steroid medication Poppy took for the first five weeks of treatment, it reared it’s ugly head again this week as we began a new 5 day course. I was warned from the beginning that the steroids were the worst part of the treatment…by the doctors and nurses, as well as other parents of children who have undergone this and by Graham who has experience of them with his own patients. Somehow it’s only through my own actual experience that it has dawned on me what everyone was talking about. There is quite simply nothing that could have prepared me for what was to come.
Chemotherapy is so heavily associated with cancer, that I initially failed to understand how anything could be more traumatic or intensive than that. One of the pleasant surprises (if you can call it that) is the number of different treatments that chemotherapy encompasses. Each dose carries it’s own challenges and often, it’s not the procedure itself but the side effects which are the most challenging to deal with. The big obvious one being hair loss, and the one that first ran through my mind when Poppy was diagnosed. That seems like small fish compared to the side effects of the steroids.
Where do I start with trying to explain? The Poppy we know and love evaporates on steroids. Our giggling, humorous, well-behaved Poppy transforms into an emotional, clingy, agitated shadow of her former self. At age 3, most toddlers have moments of being irrational, but actually Poppy can usually be talked round. Her level of understanding and wide vocabulary means that we have usually always been able to explain the reasons behind a decision. On Dex, that’s no longer the case. Random requests are fulfilled, only to be met with hysterical tears because something isn’t quite as it should be, usually because the full instructions weren’t communicated effectively.
Steroids deplete every ounce of Poppy’s well being. They affect her mobility, mood, behaviour, appetite and sleep to name a few. Everything becomes an enormous effort on her part and even her speech becomes slurred and slow, as if even talking is beyond her. She’ll fail to greet loved ones and cling desperately to me. If I am not seated within touching distance of her, she’ll repeat “I need mummy to be with me” until I am. On occasion, she’s even said it when she’s sitting on my lap, holding my hand and I’m at a loss at how I could be any more with her!
During the initial five week course, the side effects took several weeks to kick in and when they did, we tried to rally against Poppy’s irrational behaviour by attempting to maintain a sense of normality. We needed one constant in our ever-changing world and that meant trying to abide by the values we’ve always held. We quickly realised that this approach wasn’t tenable. The uncontrollable tears that followed were never worth the simple decision we were holding out against. A packet of teddy bear crisps became a daily ritual and broccoli was occasionally eaten for breakfast.
When Poppy was diagnosed, I would have given her anything she asked for as I held her tightly in my lap that fateful afternoon. But as the reality of what we were being told sunk in, it soon became apparent that the novelty of treats and presents would wear off. What Poppy needs is the same boundaries, love and attention we’ve always given our girls. Having come out of the other side of the initial course of steroids, we now know that the resulting side effects are temporary. During that window each month when we’ll have to face them again, we’ll be a little better equipped to deal with them. That may mean giving in to demands and accepting that for a short period, life gets even harder than usual. We’re trapped in an endless cycle of attempting to do what is best. Without the steroids, I would never give in to hysterical demands. Without the steroids, Poppy would never act like this.
Life feels like it’s been split into two. I’ve lost count of the times I’ve started a sentence with the phrase “before all of this…” It’s unbelievable to look at photographs of Poppy just a few months ago, before Leukaemia turned our life upside down. At times, I’m rushed right back to those confusing early days and it feels like I’m trying to accept this diagnosis all over again. Even two months in, I still have moments when it doesn’t seem real. Like it couldn’t possibly be actually happening. Two months in. Another month before we’ll even be able to say that we have less than two years of treatment left. It’s unimaginable, heartbreaking and at times, truly terrifying.
But as each new day becomes one day less, we take a deep breath and go on x