“The day before my child was diagnosed, I wasn’t a cancer parent either.”
And yet, here we are, into our fifth year of trying to sustain one child through this ugly combat, and parent three others through their sibling’s suffering.
25 days have passed since Ned’s second bone marrow transplant, and we’re now amongst the “old hands” on the RCH oncology ward. Ned deteriorated very soon after the donated cord blood cells were given on 20th August, with odd patterns of unusual symptoms that presented a dilemma for many of the medical teams involved. A severe top-to-toe (extremely itchy) rash, combined with fluid imbalances, fevers, headaches, pain, nausea, delirium, rare medication reactions, low blood pressure, and electrolyte disturbances presented a confounding picture with evasive answers. After many investigations, a skin biopsy revealed it had been early graft-vs-host disease (GVHD) all along, but with a different pattern because he’d had CAR-T prior - using Eleanor’s cells (in his body from previous transplant)! The relief from this discovery was short-lived as the treatment was high-dose steroids... And many a cancer parent is intimately aquainted with the hellish responsibility of caring for a sick child on high-dose steroids!
A few days later, on Day +18, the blood results revealed that the new stem cells had engrafted, and he’s been slowly but steadily improving since then, thank God.
Yet another small victory, worth a celebratory hug and some rejoicing… but in the grander scheme of things, in my current, ever-increasing, weariness-induced pessimism (arguably justified given the lead-in we’ve had), there is still a very long, torturous road ahead. And now we await the all-important Day +30 bone marrow test results in the coming week, and then the “magic” Day +100 mark.
You see, the treatment regimes for most childhood cancers are really quite antiquated due to a disproportionate lack of funding compared to adult cancers. Whilst hundreds of new drugs have been developed for various adult treatment protocols since 1980, only 3 have been developed for paediatric cancers - even despite there being greater long-term tolls and more numerous years of life lost from paediatric cancers. I could go on with statistics to prove the disrupted quality of life, the severe side effects and organ damage, but the harsh reality is that even if a child survives childhood cancer, there will most likely be long-term ramifications, sometimes life-limiting, for many years to come.
Sometimes, more often than not when my mental health is struggling, it is just all too overwhelming for me to ponder ahead or dwell on. So, despite being born a ‘type A personality’, with plans A, B and C, as well as plans D & E coming out my ears, and now being subjected to a life ruled by the whim of a most unwelcome, temperamental, insidious disease, with 4 dependents, I’m finally starting to prefer, by sheer necessity, a new mantra: “taking each day as it comes”. If, after another sleepless night, I ruminate about my lack of rest and wonder about how I’ll survive the coming day or week ahead, I’ll dig myself unnecessarily into an even deeper hole than I was before, so I’ve had to find a better way. Hence why I’m now teaching myself how to “live in each moment”; leaving all previous suffering, hardship and discomfort out of each precious moment. Because God, in his mercy, graciously gives me the aliquots of strength I need to get me through just one moment at a time. That’s all I need to focus on... how I will serve in THIS moment.
In this moment, I’m getting to cuddle my over-tired, but beautifully-soft 1-year-old while he breastfeeds.
In this moment, I’m getting down to level with my 3-year-old’s protesting eyes and speaking my love to her through her shrieks of stubbornness.
In this moment, I’m pausing between the baby’s breakfast spoonfuls to watch the tree leaves cast dappled sunshine on the path outside our hospital window, as staff rush in to work.
In this moment, I’m relishing the fact that my 9-year-old feels safe enough to ask me the difficult questions, or thrash out some complex emotions that she’s been dealing with.
In this moment, I’m dragging myself out of bed, casting the numerous preceding night wakings from my mind, to cuddle away some pain and comfort a night terror.
In this moment, I’m sipping the warmth of what has become our wellness-giving daily coffee.
In this moment, I’m savouring the warmth of direct sun on my face while enjoying a quick walk outside with my husband.
In this moment, I’m wiping away Ned’s tears, speaking words of love and reminding him of his preciousness, while also firmly holding his arms down during a procedure.
In this moment, though my voice quivers and siblings are screaming for attention, I’m singing him his favourite bedtime song over FaceTime.
In this moment, I’m carrying him to the toilet, pushing his pole, savouring the closeness of his frail body in my arms.
In this moment, though the smell of fresh vomit is pungent, I’m feeling the tension of his preceding nausea draining from his body.
In this moment, I’m rubbing in slathers of thick moisturising creams whilst simultaneously holding down cold packs to reduce the intensity of his constant widespread itch.
In this moment, I’m quietly rejoicing that we got another day. Another day with our Ned.
“I can do all things through Christ who strengthens me.” - Phil 4:13