Guest blog – When Fifi got sick

When Jen asked me to write a blog post about my son Sifiso, my immediate reaction was…YES! Absolutely. I love to write and I love what she is doing. Not to mention that she and her partner are fantastic cooks. So I was scared they’d stop inviting us over for a meal if I said no. Plus she lives around the corner so she could find me pretty easily. But when it came down to actually writing this post, I must say that I’ve really struggled. And I’ve been trying to figure out why. The fact is that it’s really hard to go back to those days in June and July this year. It’s not like it didn’t affect me because the effect was pretty profound. And I’m definitely not trying to pretend it never happened. It’s just unbelievably hard. Even now, several months down the line. It was the longest and hardest couple of weeks that we’ve ever had to face as a family, the worst form of helplessness that you can imagine…seeing your child get sick, not being sure why, trying not to imagine the worst but preparing yourself for the worst all at the same time. Mostly though, I can’t get my head around how the doctors at Charlotte Maxeke’s paediatric oncology ward get up every day and do what they do. How they fight for each child who walks through that door. Because that’s what it felt like.

But I’m getting ahead of the story. Sifiso (or Fifi as we call him) is four years old and around about April this year, he started getting sick. Nothing too unusual at first. The seasons were changing. The kids at school were passing around the usual wonderful cocktail of bugs. What was unusual for Fifi was that he would get better – and then get sick again after a few weeks. He started to vomit blood and his platelets were checked. Low – we were told. But probably a virus. Check them again when he’s better. And whatever you do, don’t google ‘low platelets’. Maybe we should have listened. Because when you suddenly have to confront that your child might have cancer, it’s impossible to think about anything else. Everything changes. Just like that. He never got better for long enough to check the platelets on a healthy version of himself. The healthier version of Fifi, by the way is busy…very busy…happy to be part of the crowd. Great at getting other people to do his bidding. Loves music and dancing and making up silly games. Laughs until he makes himself fart. Then laughs even more. Looks like…well think Lenny Kravitz aged four. Same magnificent afro less the nose ring and tattoos. This Fifi was too tired to walk outside, let alone play when he got there.

By the beginning of July, he was so sick that we were advised to take him into the paedriatric oncology ward. On Friday morning, 6th July, we set out for Charlotte Maxeke hospital. He kept asking us where we were going. Because both his father and I work, it’s unusual for us both to be at home with him on a weekday. So he knew something was up. Poor kid probably thought we were going on holiday. I don’t remember every detail of that day. I remember that it was a very grey winter’s day. Not the usual sunny but cold Johannesburg winter’s day. It felt like someone had somehow airbrushed the colour from the sky. I kept thinking to myself that today is no big deal for most people. Just another day. Going about their business. But it was our big deal. I remember a lot of the faces, of the children and their parents in the ward with Sifiso. How long had they been there? How long would they need to stay in the hospital? How far did they need to travel to get there? If they were from out of town, where were the parents staying while their children received treatment? Were they able to get time off work if they were working?

Sifiso ended up having a bone marrow aspiration, an extraction of the marrow from his hip, that day. We were with him while he was put to sleep. We were there when he woke up. In between we waited and prayed. You try not to let your head run ahead of you. You try not to let your heart run the show. Doesn’t really work though. Sifiso’s story has a happy ending. He was diagnosed with Idiopathic Thrombocytopenic Purpura (ITP) – a blood disorder which, in his case was acute and eventually resolved itself.

We hear about poverty and inequality in our country all of the time. Many of us try to do our bit but it’s still out there somewhere. A comfortable distance away. Far enough for us to drive by and go about our business without rubbing up against it all of the time. Healthcare somehow shines a glaring spotlight on just how cruel the gaps in our society are. Where you live and what you earn pretty much determines what kind of health care your children can access. In extreme cases, like cancer, it can determine whether or not your child survives. Only 17 out of every 100 South Africans are covered by medical aid and private care . That leaves about 45 million South Africans reliant on an overwhelmed public health system when their children get sick. There are some rare exceptions where it feels like something special is happening. Where your medical aid card doesn’t need to be waved around before the hospital doors swing open. Charlotte Maxeke’s paediatric oncology unit is definitely one of those exceptions. We didn’t know how our day there would end when we arrived. Whether we would have to remain at the hospital with Fifi or whether we could bring him home. What it felt like from the very beginning was that we had a team of the most dedicated professionals in his corner. That’s how it should be. We got to come home with our son. Many others sadly don’t. What they do have, however, is a real fighting chance. The best out there. That’s something to be celebrated. That’s why we’re supporting CARE every chance that we can get. Even it’s from a comfortable distance.