It was a wintery Friday at the end of March in 2015. We went in for blood tests in the morning to check if Nooa’s low haemoglobin levels had risen after a course of iron tablets. We marked the occasion of having got through the blood test by getting a light lolly. Nooa went off to school and mum went to work. There was an ice hockey tournament on at the weekend, the following weekend was easter which was to be spent skiing and the weekend after that was another ice hockey tournament combined with a trip to a water park.
After a few hours had passed, the phone rang. I could hear from the doctor’s voice that there was something wrong; “You need to go straight away and I’m going to say you’re going to say it’s Children’s Hospital because they’re going to send you there anyway.” I see. Something awful. Panic.
Dad left to pick up our son from school; he was dirty from head to toe, because what else would he have been doing but playing football. Always, football or ice hockey. One time at ice hockey practice he had complained about a pain in his legs. He had been a bit pale but that was explained by him having had scarlet fever in January, which had come with a whole host of symptoms. Otherwise healthy, the doctors had said.
Suddenly we found ourselved at the Children’s Hospital, our son is offered a bed as soon as we sign in and we are directed to a room of our own. There were a lot of doctors and nurses and nobody is saying a word – they’re all busy doing their examinations and referring us to yet another examination. They’re giving us funny looks and trying to lighten the mood with chatter. We have no idea what is happening. We’re scared.
And then suddenly a door opens: ”Hello, I’m the Chief of Medicine at the Children’s Hospital oncology unit”. That feeling of everything washing over you, all in that one title. Nooa is having a great time, doctors are keeping him entertained and he has an IV drip in both hands. “Leukaemia, almost 100% certainty”. No, not our Nooa.
That end of March was over eight months ago, an eternity. The diagnosis was confirmed as an acute lymphoblastic leukaemia, ALL, and it’s most common form type B with a mid risk level treatment plan. But now, finally after eight months we’ve been told that Nooa’s bone marrow is clean, the cancer cells are gone. Fantastic, it’s gone. And never again, we have decided that.
And what a fighter we have. Naturally the treatments took a lot out of him, in the summer he kept falling over and couldn’t get back up on his own. Even so, he still had to play football. Or some Frisbee golf, even if it was just a couple of courses. At his worst he was barely able to stand up, but still he was out there, leaning on a hockey goal in the field and kicking a ball into the goal again and again. Lucky he did, we can say that now.
And the conversations. So deep. Everything under the sky. Not knowing how to respond – he amazes us with his musings. Suffers, we can see the agony on his face behind the tears – he’s scared and angry. He understand what he’s missing out on – tries to understand, tries to find someone to blame, tries to find answers. Wonderful conversations, but not the kinds you should have to have with your eight year old son – the boy should be able to just play and spend time with his friends.
It’s funny looking back on it. We’ve lived in isolation at home and one moment at a time – we haven’t been able to, we’ve been afraid to plan anything. We’ve been afraid and we’ve enjoyed the little moments. We’ve had no energy, we’ve been unable to do anything. All you want to do is protect your child.
And now, suddenly life is full of light again. Nooa is back in school, first on a trial period for a month, not he’s been attending regularly for a month – our courageous second grader. So quickly, on the other hand.
Life is ”normal”; as normal as it can be what with a catheter, weekly blood tests, daily chemotherapy drugs and other medication and regular periods spent in hospital. Of course he has limitations, but he has forgotten most of them already – he can go to school but pretty much everywhere else is off limits, and because of his catheter he can only spend a few hours by himself. With the exception of the indoor ice hockey rink where we go and watch his little brother’s matches as well as his own team’s practice and matches.
One day at a time, that’s the way it goes. But now we can start thinking about next spring and the late booster stage of the treatment. His hair will fall out again, but it will grow back. We’re facing into a rough few weeks, but we will get through them and the catheter will be removed. Life will change again, feels strange to be able to think that our life will become almost normal next summer. After that it’s only “a bit over a year” of chemotherapy drugs administered orally. It’s all too normal.