'Two weeks before the diagnosis, Sem got corona. He was tired and didn't want to play. One morning he woke up really not feeling well. It turned out he also had a double ear infection. The doctor gave a course of antibiotics and advised me to come back if Sem would not recover. I did, because Sem remained ill and my motherly feeling told me something was wrong.’
Blood transfusion?
'During another doctor's visit, Sem had no strength and was totally pale. He didn't want anything, had a fever for over a week, some bruises, yellowish ears and didn't even want to walk anymore. That day we were referred to the emergency room. I wanted him to be examined by a pediatrician. But the results of the tests turned out to be good, which surprised me quite a bit. Nevertheless, they took a blood sample. At the end of the afternoon we were called: Sem had to go to the hospital in Ede for a blood transfusion. That will happen more often, I thought. But, once in the hospital we were taken apart. Sem turned out to have leukemia.’
Department ‘Schommel’
'We were completely silent. At such times you don't dare ask all your questions and you don't even know what to ask. We were completely overwhelmed. Immediately we were referred to the Princess Máxima Center. We knew the Máxima, because on our way to visit my sister in Rotterdam, we always passed it. Just imagine your child lying there, my husband and I often said to each other. Not knowing that our child would also be there. That is so strange. We knew that sick children with cancer were hospitalized there, but not as specifically as we know now. So I found the first time in the Máxima quite confronting. Downstairs we immediately saw two children without hair. We thought: Is Sem thát sick? Are you sure this is the right place? Soon we were sent to the third floor, to the Schommel Department. We felt welcome and everyone was so sweet. There was little time to think, despite all the sadness. You also get so much information on the first day.'
Journal
'We had to stay for a week. During that week there were many examinations and photographs. I kept a diary. I got that as a tip from a friend. So much happened that one morning I had already written a whole page full, and then the afternoon was still to come. Otherwise I'll never remember it all, I thought. I really had to push myself, because I was so exhausted after a day like that. But I'm very glad I kept the diary.’
Blood cells
'Sem has a 90% survival rate. You stick to that because that's high. When I mention the percentage now, I still feel like it's not about my child. It feels like a blur going past you while you're in the middle of that rollercoaster ride. We had to go to the hospital every two weeks for chemo. Sometimes we go to shared care, other times we come to the Máxima. If Sem's white blood cells are low, he has little resistance. Then he has to come back more often - something that happened quite often lately. In the beginning we also had quite a few setbacks. Sem had chicken pox twice and the PAC even had to be reinserted once because bacteria had gotten into it.’
Maintenance phase
'Now I give him chemo at home: once a week a tablet and MTX and daily he gets 6MP through the tube. How to do that, the pharmacy assistants explained. If Sem gets a fever, we call the Máxima first. Then we are sent to the shared care center for blood sampling. The doctors there then have contact with the Máxima and together they make a plan. Personally, I find it nicer to just be in the Máxima when Sem is admitted, instead of in the shared care center. Because this way the communication lines are shorter and you get a result faster.'
Motherhood
'I'm not working at the moment. I want to be there completely for Sem. If there is something, we have to be able to react quickly. He is doing a lot better now. We see that he is getting more and more energy, but it could just be that we are back in the hospital tonight. Now he is playing again and going to the nursery. By the way, there is a nurse there, which I really like.
My tip to other mothers: follow your gut, because a mother's gut feeling is very important. Write it off. Take lots of pictures and movies for later. And try to find relaxation. Take a day for yourself once in a while and do something fun. After all, that's when you can be the best version of yourself for your child and the rest of the family.
Next year in July, Sem hopes to get his flower bead. Until then, he doesn't mind going to the Máxima at all. On the contrary, he keeps asking, ‘When are we going again?’ and is disappointed if we don't stay overnight....’
Blood transfusion?
'During another doctor's visit, Sem had no strength and was totally pale. He didn't want anything, had a fever for over a week, some bruises, yellowish ears and didn't even want to walk anymore. That day we were referred to the emergency room. I wanted him to be examined by a pediatrician. But the results of the tests turned out to be good, which surprised me quite a bit. Nevertheless, they took a blood sample. At the end of the afternoon we were called: Sem had to go to the hospital in Ede for a blood transfusion. That will happen more often, I thought. But, once in the hospital we were taken apart. Sem turned out to have leukemia.’
Department ‘Schommel’
'We were completely silent. At such times you don't dare ask all your questions and you don't even know what to ask. We were completely overwhelmed. Immediately we were referred to the Princess Máxima Center. We knew the Máxima, because on our way to visit my sister in Rotterdam, we always passed it. Just imagine your child lying there, my husband and I often said to each other. Not knowing that our child would also be there. That is so strange. We knew that sick children with cancer were hospitalized there, but not as specifically as we know now. So I found the first time in the Máxima quite confronting. Downstairs we immediately saw two children without hair. We thought: Is Sem thát sick? Are you sure this is the right place? Soon we were sent to the third floor, to the Schommel Department. We felt welcome and everyone was so sweet. There was little time to think, despite all the sadness. You also get so much information on the first day.'
Journal
'We had to stay for a week. During that week there were many examinations and photographs. I kept a diary. I got that as a tip from a friend. So much happened that one morning I had already written a whole page full, and then the afternoon was still to come. Otherwise I'll never remember it all, I thought. I really had to push myself, because I was so exhausted after a day like that. But I'm very glad I kept the diary.’
Blood cells
'Sem has a 90% survival rate. You stick to that because that's high. When I mention the percentage now, I still feel like it's not about my child. It feels like a blur going past you while you're in the middle of that rollercoaster ride. We had to go to the hospital every two weeks for chemo. Sometimes we go to shared care, other times we come to the Máxima. If Sem's white blood cells are low, he has little resistance. Then he has to come back more often - something that happened quite often lately. In the beginning we also had quite a few setbacks. Sem had chicken pox twice and the PAC even had to be reinserted once because bacteria had gotten into it.’
Maintenance phase
'Now I give him chemo at home: once a week a tablet and MTX and daily he gets 6MP through the tube. How to do that, the pharmacy assistants explained. If Sem gets a fever, we call the Máxima first. Then we are sent to the shared care center for blood sampling. The doctors there then have contact with the Máxima and together they make a plan. Personally, I find it nicer to just be in the Máxima when Sem is admitted, instead of in the shared care center. Because this way the communication lines are shorter and you get a result faster.'
Motherhood
'I'm not working at the moment. I want to be there completely for Sem. If there is something, we have to be able to react quickly. He is doing a lot better now. We see that he is getting more and more energy, but it could just be that we are back in the hospital tonight. Now he is playing again and going to the nursery. By the way, there is a nurse there, which I really like.
My tip to other mothers: follow your gut, because a mother's gut feeling is very important. Write it off. Take lots of pictures and movies for later. And try to find relaxation. Take a day for yourself once in a while and do something fun. After all, that's when you can be the best version of yourself for your child and the rest of the family.
Next year in July, Sem hopes to get his flower bead. Until then, he doesn't mind going to the Máxima at all. On the contrary, he keeps asking, ‘When are we going again?’ and is disappointed if we don't stay overnight....’