Pim (4) has a rare form of childhood cancer: 'The pediatrician had tears in her eyes'

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After a long day in the emergency room, the pediatrician called us back that evening. He asked if we wanted to come in for an ultrasound to rule out tumors. I knew immediately: this was bad. At 10 p.m., the results arrived: suspected neuroblastoma. The pediatrician was in tears. We didn't know what it was at the time. We even asked if he would be prescribed antibiotics. But it turned out to be a rare form of childhood cancer, which affects only 20 to 25 children in the Netherlands each year.

Within six months, Pim had been misdiagnosed multiple times, and his trust in the doctors had vanished. Meanwhile, the cancer had spread to his bones, bone marrow, lymph nodes, and palpable bumps on his skull. Pim underwent an intensive course of chemotherapy, surgery, immunotherapy, and radiation. For a while, the disease seemed under control, but recently, the cancer returned.

From day one, Grandma and Grandpa were there for us. They look after our youngest, sleep with us, and have temporarily put their lives on hold. Sometimes we're in the hospital for weeks at a time. Often, one of us goes back to spend time with Sem. We try to make sure Sem isn't forgotten, but he often misses us. It bothers us, but we're backed into a corner.

In the Netherlands, treatment options are limited once neuroblastoma recurs. The situation is different in the US: 600 to 700 children receive this diagnosis there each year, so there's much more knowledge and experience, especially if the disease recurs. Pim is eligible to participate in a trial treatment with the drug DFMO, intended to prevent the disease from recurring. The program lasts two and a half years, requiring ten trips back and forth. We're also exploring additional treatments in New York, including medication administered directly into the spinal cord. All to give him a fighting chance.

The treatments abroad are experimental and therefore not covered by insurance. The costs run into tens of thousands of euros. Crowdfunding wasn't an easy step, but we're doing everything we can to give Pim a future with his little brother Sem. The alternative is to sell our house, but that would further unbalance our family, and we don't want that. We've already endured so much together. As long as Pim has that spark inside him, we owe it to him to keep fighting. He plays, he laughs: that's our benchmark.

Donations are certainly important, but what we especially want to convey is this: as a parent and as a person, always listen to your intuition. Don't let yourself be led astray, because if you stay true to yourself, you'll always be in the right place. Gain knowledge yourself and be your child's advocate. Don't just look at what doctors here say; dare to look further for opportunities – wherever they may be in the world.

For privacy reasons, fictitious names are used in this article.