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On with normal life after the 'flower bead'

Fiene was just four years old when she was diagnosed with neuroblastoma. Fiene's parents, Marije and Jan, kept a blog during her illness. On November 5 in 2021, Fiene received the so called flower bead. It is now a year and a half later. We asked Marije and Jan how Fiene is doing now. You can read their blog below the photo.

'Fiene was just four years old when a large tumor was discovered in her chest and abdomen. A neuroblastoma with multiple metastases was the diagnosis and an intensive treatment program of almost a year and a half followed. On November 5, 2021, Fiene received the flower bead, as a conclusion to a difficult time. And then, on with ‘normal’ life.

But how do you do that without the regular, exciting but also often reassuring, visits to the oncologist who tells you that everything looks good? Six weeks later we were already hanging on the phone in tears. Fiene hadn't been well for a while, had stomach aches and didn't eat much. It did not feel good. The Maxima Center was very understanding. We were able to come in quickly and an ultrasound was made of her belly. There was nothing wrong. Fiene was just sick, like children can just be sick. Only we still lacked that trust.

A year and a half later

Now we are one and a half years further. Fiene is almost seven and is in group 2. She has grown enormously in recent times, literally and figuratively. Fiene has never been an athletic prodigy and the time in the hospital didn't change that. But she went to gym, gained confidence in her own little body and we saw her get stronger physically. Walking, biking and playing in the playground. Further and further, faster and easier. Other children she keeps up well now. She eats well, has her old figure back and her beautiful hair grew back. We have also seen her blossom socially. Where before she could be very shy and introverted, there now stands a strong, happy girl who can connect well with both children and adults. She has a nice club of friends around her, she knows what she wants and stands up for herself when necessary.

Under control

Every three months we come back to the Máxima Center for check-ups. An ultrasound, blood sampling, submitting a pee and sometimes an MIBG scan or MRI. This is always exciting. It happened a few times that the check-ups were not quite right after all. There were abnormal blood values. And six months ago a spot was discovered on her liver. It turned out to be an FNH. A benign liver tumor that occurs more often in children who have received chemo. It can't hurt and it doesn't bother her. Our idea: if you search regularly, chances are you will find something once. And if something abnormal is then found, for us it is not an immediate cause for concern.

In the past year and a half we have learned to have faith in Fiene's health and her body again. And that little voice in the back of our heads that cries out 'it can't be...', we are silencing more and more easily.'