We were so engulfed by the daily routines of gruelling treatment. Our carefree lives had filled with despair, frustration and constant worry. I’d never seen my husband angry before. He’d always been calm and considerate, but now every time he sat down, he sighed. His shoulders tense and frown lines formed on his brow. He’d snap at the simplest of requests when I called from the hospital. I think hanging onto anger was his way of not breaking down completely.
Mine was to keep going, never stopping, not sleeping and to log every blood-draw, scan, surgery, medication and seek patterns in the charts I’d made, trying to make sense of it all. The trouble was there were no answers or solutions to comfort me. I felt powerless. All I could do was be there, no matter what.
My 11 year old son’s cancer diagnosis came as a complete shock. Even the doctors had missed the real cause of the pain in his foot. A rare cancer is not the first thing that medics think of when a ‘healthy’ child presents with problems.
Alveolar Rhabdomyosarcoma.
Even as an experienced nurse, I’d never heard of it before. So, in full nurse mode, I began researching. As my child slept after vomiting all day from chemotherapy, I’d curl up on the bed beside him and scroll through endless medical articles that detailed this horrendous subtype of cancer and it’s poor prognosis.
Between sobs, I’d stroke his bald head and gently rub his bony back as the pump from his night feed slowly rumbled on. Now unable to eat, the gastrostomy tube into his stomach was the only way he could tolerate any nutrients.
As well as being a nurse, I was also a holistic practitioner, so as we lay in the dimly lit side-room, we’d softly play soothing mantras and reiki healing sounds. Our friends had also given us a Bethel Music playlist and the song ‘We Will Not Be Shaken’ echoed off the walls when we played it loudly. Our minister presented a tactile cross carved from beautiful Italian olive wood. It fitted the palm of my son’s hand perfectly. His bed was adorned with all sorts of gifted cuddly animals. In his brighter moments, he’d make them all wee fabric jackets during his sessions with his play therapist and play with them together with his little brother when he came to visit.
Some nurses were especially patient and caring, even tolerating his fierce resistance to medication. Four hours was his record for refusing to take 1.5mls of a disgusting solution. It was within these moments of kindness and support we found hope. It was in the little things, the glimmers in the darkness, where it shone the most.
We hung onto every shimmering strand and never let go. Five years later there are still difficult days and irreparable damage but my son is here and for everyday we’re grateful.
His saying, ‘you don’t have to have a good day, sometimes a day is good enough,’ is our new family mantra.
Our mantra of hope.