September is early spring in our neck of the woods. At the end of the twelve months of treatment, we got the news we were waiting for – remission. And as the days grew longer, our confidence grew. October passed with no treatment and good test results. Our son’s hair started to grow back. His appetite picked up. November passed. At the end of it, we celebrated a milestone we had feared never to reach: his second birthday.
Wednesday was a chore to be done, not a weekly via dolorosa – one day a week of tests, confirmation of the good news, then back to our real lives.
We had faced the greatest challenge we could imagine, and faced it together. Our family and our marriage had come through. We were deliriously happy.
I’d known since I was a toddler what I wanted to do with my life. I was confident God had made me to be a writer, and to be a mother. It was time to get back to the life plan that had been interrupted by the cancer. I enrolled in a local writing club, and we started watching my NFP temperature charts to pick the best time to conceive baby number 3.
A little over a month later, the test results turned pear shaped, and we were back into the chemotherapy round: back to the routine of tests, x-rays, and injections. There were two changes. There was a new medication regime with daily pills, weekly pills, monthly pills, and monthly injections. This meant he was a little bit sick all the time, and there no more really good days. On the other hand, the really bad days were four times less frequent.
The other change was that I could no longer be in the room during x-rays, because we’d conceived first try.
Once again, life narrowed to the essentials, as we coped with a sick child, an active preschooler, and five months of morning sickness, followed by sciatica and heartburn.
Your capacity to manage in dire circumstances is greater than you can imagine. We endured. We even joined the committee that raised funds for the playground at the hospital, and we went on to form part of the founding group for the Child Cancer Foundation – an association of parents committed to helping parents.
Meanwhile, what little capacity the local parish had for working together to support those who needed it had been shredded during the building of a large, ornate, church with no room for people to meet – and, except for attendance at Mass, we had more or less dropped out of our church community. Our new parish priest even closed down the Rosary group I’d attended since I first starting taking instruction as a Catholic, saying that no groups should meet unless a priest was present, and he didn’t have time.
In due course of time, our third child (our second daughter) entered the world – setting her individual stamp even on her birth. She began the day with her head turned side on, giving her mother a very unpleasant time of it. After that inauspicious start, I couldn’t have wished for an easier baby. While the boy still would accept no-one but me during treatment and tests, the pre-schooler was happy with my mother, and the baby was content to pass from nurse to nurse around the hospital, being produced for feedtimes and then carted off again by another of her fan club.
This was just as well, because we had several overnight and longer stays in hospital as daughter number one was now in contact with one childhood disease after another. The boy’s compromised immune system made him very vulnerable, and each time we heard that kindergarten or play group had been invaded by mumps, chicken pox, measles, rubella or the like, we were off to the hospital for an injection of gamma globulin injections and an anxious watch and wait.
Why, oh why, do people not get their children immunised to help protect those for whom immunisation is too dangerous? And what possesses people to send their sick children out to play with others, with never a word of warning to the others? Community spirit? Not in any way shape or form.
In other ways, too, we were concerned. The boy was small for his age, and no wonder given the drugs and the cancer. But he was also fell far more frequently than we thought normal, and lurched, rather than walked. He had taken his first independent steps at 11 months. Two years later, his gait was still as uncertain and as laboured.
‘All within normal parameters,’ said the doctor, who was convinced that mothers were to be soothed, humoured, and ignored. (There is, I am sure, a compulsory course at Med School designed to teach doctors that use of a womb entails permanent impairment of the brain.)
It took us another 15 months to get the doctor to see there was a problem, and six months more for a partial diagnosis.
Part four: physiotherapy, occupational therapy, hippotherapy, hydrotherapy, speech therapy…