One year into treatment, and things are looking brighter.
My five year old son, Joe, was diagnosed with Acute Lymphoblastic Leukaemia (ALL) in October 2014. This blog is tracking the course of his treatment, and life around it. For regular posts see https://kamransword.wordpress.com, or follow us on Twitter @joehasleukaemia
Late October, after the clocks have changed and the night expands to steal the daylight, always feels like the slide towards the twilight of the year. Last year, these feelings were compounded as our physical horizons also shrank to cope with Joe’s treatment; shuttling between home and hospital, with rare outings to school. One of Joe’s coping mechanisms at the time, when he wasn’t watching films, was drawing. He had couple of magnetic drawing boards, and would spend hours drawing little shapes, and then filling them until the whole board was black. He stopped drawing people, and wouldn’t look in mirrors; and even when he drew with pen and paper, everything was dark and monochrome.
Since the summer, Joe’s physical confidence has returned, along with his hair. He enjoys looking in the mirror, and at photos of himself again. He no longer feels the need to wear a hat to leave the house. Colour and people have also returned to his drawings – people with smiles, and hair; bright sunshine and bold patterns. Now that we are all back into a daily routine of school and work, and the intensity of the treatment has eased, it feels as though our horizons are lifting. We can even think of taking family trips away at weekends; and accept work commitments that might take us out of town – or even out of the country.
This week is half term, and also time for Joe’s second lumbar puncture of maintenance. The routine is familiar and, now that he is older Joe is usually towards the end of the list, meaning that we have a few hours to while away on the ward before it’s his turn. Yesterday was no exception; Joe found plenty to occupy himself, despite being more aware and more nervous of the procedure than previously. It also gave a chance to catch up with some of the other families in for the same list – many of whom were at different stages of leukaemia treatment protocols. For childhood acute lymphoblastic leukaemia, these protocols stretch out over several years and monthly to quarterly visits to day-care, giving many opportunities to compare experiences, and share advice and support.
Not all families who end up on the ward are as fortunate. Some children can end up with such rare conditions, or prognoses, that there will be no local network of parents sharing the same experience at the same time. Yesterday provided a poignant reminder of this, when Kim came to visit, bringing with her some Halloween goodie bags funded from the charity set up in memory of her daughter, Rhiley. For a few delightful moments, the playroom was transformed with the buzz of shared happiness.