‘My mother’s intuition told me something wasn’t right. Sem had COVID, but also leukemia.’

Miranda says: ‘Two weeks before the diagnosis, Sem got COVID. He was tired and did not want to play. One morning he woke up so sick. I thought: wow, this is really hitting him hard. It turned out he also had a double ear infection. The general practitioner gave him antibiotics and told me to come back if Sem did not improve. I did, because Sem stayed ill and my mother’s intuition told me that something was not right.

A blood transfusion?

During yet another visit to the general practitioner, Sem was completely limp on my lap. He did not want anything, had had a fever for more than a week, some bruises, yellowish ears, did not even want to walk anymore, and looked very pale. That day we were sent to the emergency department. I wanted him to be examined by a pediatrician. But the first test results looked fine, which really surprised me. They still took blood. At the end of the afternoon we got a phone call: Sem had to go to the hospital in Ede for a blood transfusion. I thought that probably happened more often. But once we arrived, we were taken aside. Sem turned out to have leukemia.

Referred to the Máxima Center

We were completely silent. In that moment you do not dare to ask all your questions, and you also do not know what to ask. We were overwhelmed. We were immediately referred to the Princess Máxima Center. We actually knew the building, because on our way to my sister in Rotterdam we always drove past the Máxima Center. My husband and I often said to each other: your child would have to stay there… Without knowing that our own child would end up there too. It is so strange. We knew that children with cancer were treated there, but not in the detailed way we understand it now.

Confronting

So that first time at the Máxima Center felt quite confronting. Downstairs we immediately saw two children without hair. We thought: Sem cannot be that sick, right? Are we even in the right place? We were soon sent to the third floor, to unit Schommel. We felt welcome and everyone was so kind. There was hardly any time to think, despite all the sadness. You also get so much information on that first day.

Diary

We had to stay for a week. During that week many tests and scans were done. I kept a diary. A friend gave me that tip. So much happened that in one morning I had already filled a whole page, and the afternoon still had to come. I kept thinking: I will never remember all of this otherwise. I really had to push myself to write, because I was exhausted after a day like that. But I am very glad I kept that diary.

Like a haze

Sem has a survival chance of 90%. You hold on to that, because it is high. Even now, when I say that percentage, it still feels like it is not about my own child. It feels like a haze passing by you, while you are right in the middle of the rollercoaster. We had to go to the hospital every two weeks for chemo. One time we go to the shared care center, the next time to the Máxima Center.

Blood cells

When Sem’s white blood cells are low, he has little resistance. Then he has to come back more often, which has happened quite a lot recently. In the beginning we also had some setbacks. Sem had chickenpox twice, and his port-a-cath even had to be replaced once because bacteria had entered it.

Maintenance phase

Now I give him chemo at home: one tablet a week and MTX, and every day he gets 6MP through his feeding tube. The pharmacy assistants explained how we should do that. If Sem gets a fever, we first call the Máxima Center. Then we are sent to the shared care center for blood tests. The doctors there contact the Máxima Center, and together they make a plan. Personally, I prefer to be at the Máxima Center when Sem is admitted instead of the shared care center. The communication is quicker and the results come in faster.

More energy

I am not working right now. I want to be fully there for Sem. If something happens, we need to be able to act quickly. He is doing much better now. We see that he is slowly getting more energy, but it could still happen that we end up in the hospital again tonight. Now he plays again and goes to day care. There is a nurse there, which I find very reassuring.

Tips for other parents

My tips: trust your instincts, because a mother’s intuition is very important. Write things down. Take lots of photos and videos for later. And try to find ways to relax. Take a day for yourself now and then and do something you enjoy. That way, you can also be the best version of yourself for your child and the rest of your family.

Flower bead

Next July, Sem hopes to receive his Flower bead. Until then, he does not mind going to the Máxima Center at all. On the contrary, he keeps asking: ‘When are we going again?’ and he is disappointed when we are not staying overnight…’