Bear has leukemia: ‘We didn’t know if he would still be there later’

Fleur: ‘The doctor got straight to the point as soon as we sat down. “I’m afraid I have bad news,” she said. “I think he has leukemia.” From one moment to the next we found ourselves in a nightmare. In a bad movie. Or in one of the other clichés you know about these kinds of situations: suddenly they became about us.

It was only when the doctor started talking about the Princess Máxima Center, the hospital for children with cancer, that the penny dropped. Our child had cancer. “Is he going to survive this?” I asked. The doctor explained that children with this form of leukemia have an eighty percent chance of survival.

I couldn’t do anything with those numbers, I was too upset. There wasn’t much time to let everything sink in, because the ambulance that would take us to the Máxima was already ready.’

Bear is five months old when Roel and Fleur get the bad news. He has been unwell for a while, looks white and is starting to drink worse. They think, just like the clinic and the GP post, of an infection or virus, because it is the middle of winter.

The physiotherapist, who has been treating him since his turbulent birth, also notices that he is so pale. If the childminder is also concerned, Roel and Fleur take Beer to the pediatrician, where he is still under control. And there follows the unimaginable news.

Roel: ‘Suddenly I understood why the doctor wanted to take blood immediately and why ultrasounds and X-rays had to be taken. Why we were allowed to walk through while the waiting room was full. We didn’t realize anything until the word leukemia was mentioned. What are you saying?! I thought. I couldn’t believe it was really about Bear.

Fleur became combative. At the ambulance she looked at me and said: “Roel, we are going to do this. We have been through so much with Beer, we can do this too.” That put me down to earth. Although I did punch the ceiling of the car very hard.’

Fleur and Roel had to wait six years for Beer. They turned out to be inexplicably infertile: there was nothing wrong with either of them and yet they did not get pregnant. After several IUI and IVF attempts, the last replacement turned out to be a success.

The birth, which only starts at 42 weeks, is intense. Bear does not want to come out and is taken by emergency caesarean section. Bad news follows: Bear has suffered from oxygen deficiency, the doctors are afraid of brain damage. Fortunately, after an anxious day, that turns out not to be the case. Bear is in perfect health and can go home after six days.

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Fleur: ‘We had such a nice maternity period. Bear grew like crazy and he developed well. After that whole IVF process and this bad start, I thought: this is it, everything will go well from now on. Well, that turned out to be total bullshit.’

Beer appears to have acute lymphocytic leukemia (ALL), the most common form of childhood cancer. Every year, approximately 110 children, three to four of whom are babies, develop this disease, which involves the uncontrolled division and growth of lymphocytes, a certain type of white blood cells. As a result, there is no room for the production of healthy blood cells and a child unknowingly becomes increasingly ill.

Roel: ‘Things turned out to be going really badly for Beer. His blood was completely overgrown with white blood cells. He already received a blood transfusion at night, while they actually wanted to wait a while because it could be dangerous.

Very exciting. But it was necessary: ​​his HB, an important blood value, was 1.7 instead of the 7 to 8 that is normal for babies his age. However, because he was still so young and in full development, his body had learned to function with that low HB. That’s why we noticed so little of it.’

Fleur: ‘I still have trouble with that: that we had Bear in our arms all that time and didn’t see that he was critically ill. Our only job was to keep him alive and we almost failed. Now when I see photos from that period, where we did fun things with him while he was actually already very ill, phew. That still hurts.’

Roel: ‘At the Máxima they told us that almost all children with ALL arrive this way, after all kinds of vague diagnoses and countless doctor visits where nothing is found. I told myself that we went to the doctor four times. We hadn’t done anything at all. But that didn’t help with the guilt. Bear had never been sick before and now he had leukemia.’

At the Princess Máxima Center, Roel and Fleur receive relatively good news on the first evening. The doctors expect Beer to make a full recovery. But: the treatment process will take a long time, and the first months will be the most intense.

Bear needs a stem cell transplant, where the diseased cells in his bone marrow are replaced with those from a donor. If everything goes well, Beer will then receive properly functioning stem cells that will produce new, healthy blood cells themselves. But this first requires a number of chemotherapy treatments.

He also receives immunotherapy with the new drug blinatumomab, which clears leukemia cells and has only just been approved. It has already been given to children in the test phase, but Bear is the first child to be officially treated with it.

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Roel: ‘That stuff has instantly increased the survival rate for children with ALL to over 93 percent. If Bear had been born three years earlier, we would probably be in a completely different situation now. We were so lucky that he was able to receive this treatment.”

Fleur: ‘Sometimes I think: I now understand why it took Beer so long to come to us. He just waited for the blinatumomab, haha. At first he just kept his big head of hair, it was so nice to run my hand through it. Later, after another round of chemo, I suddenly had entire strands of hair. We finally cut it, which was quite a moment.’

Roel: ‘Of all the treatments Beer had to undergo, we were most dreading the stem cell transplant. Not least because one in ten children does not survive this treatment. The doctors had also warned us that he could experience serious side effects. Fortunately, he hardly had any until now. So we braced ourselves: it was going to be tough.’

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Fleur: ‘To make room for the donor’s cells, his resistance was completely broken down. This made him extremely susceptible to infections. We had to go through a lock to get into his room and only a few people were allowed in with him. Roel and I always had to wear a face mask. I was afraid he wouldn’t recognize us anymore with those hoods, but that wasn’t too bad.

But we couldn’t give him any kisses for five weeks. It was an exciting time because there were so many moments where something could go wrong. He could have side effects, complications or an infection, the donor cells had to do their work, but that couldn’t happen either… There were only uncertainties, while we were looking for something to cling to. We didn’t even know if he would still be there in a few months.’

Roel: ‘Two children die every week in the Máxima. There were times when that took me by surprise, just like the critically ill children in the corridors. But you have to close yourself off to that, otherwise you can’t move on. Stories about children dying were not about Bear. His story would be different, I told myself.’

Fleur: ‘We had no choice but to hope, because there was no one who could guarantee us that everything would turn out well. We felt so powerless. But what helped enormously: no matter how sick Bear was, he always kept smiling at us.

He was too little to understand what was happening to him. He had no fear and could not cope with harsh treatment. At the same time, we couldn’t explain anything to him or prepare him for anything. That he woke up and suddenly had a tube in his nose that didn’t fit well at all. So sad.’

There is good news: Bear is recovering faster than expected from the stem cell transplant. He is doing so well that he can go home after just five weeks. With a long Kanjer necklace, full of beads that he receives after an injection, a scan, chemo or other treatment. At the end of July, Roel and Fleur celebrate Beer’s first birthday.

Fleur: ‘That was such a special day. When he turned six months old, we celebrated Beer’s half-year anniversary with a small group at the Máxima. We thought that was good, celebrating what you can celebrate. But it was actually quite difficult. After all, we didn’t know whether Bear would make it to that first birthday. But now the time had come!

We now dare to assume that many more birthdays will follow.’ Because Beer’s leukemia is gone and his resistance is back to normal. He even goes to the childminder again. March 31, 2024 will be exactly one year after the stem cell transplant. If the leukemia has not returned, then that is a very good sign. When Bear is officially cured, he can ring the bell in the Princess Máxima Center, which is there especially for all children who have recovered.

Roel: ‘But that’s still a long way off. Things are going very well now, but Bear has not yet recovered. But: he is no longer on medication and we only have to have a check-up every three weeks. That’s exciting, but okay; we have more and more confidence in it. Beer’s illness slowly becomes part of our lives, instead of controlling our lives.’

Fleur: ‘That also takes some getting used to. Although it is very nice that we can resume our normal lives, I also miss the safe bubble of the Máxima, with all those wonderful people who took such good care of us and Beer. We experienced anxious and sad moments there, but our time there was also valuable. All the noise was gone, it was only about Bear and love.

And we have received an incredible amount of love, including from all the lovely people around us who sent cards and presents, who cooked for us and decorated our house with hundreds of cranes: as a symbol of health and a long life. The doctors did not want to discuss with us what happens if the leukemia returns. As far as they are concerned, that is really not an issue. I’m getting better at accepting that. Things are going well now, and we will stick to that. Because if we have learned anything in the past six months, it is to live in the moment, something I have not been able to do in fifteen years of yoga.’

Text: Neeltje Huirne