Skin rash

Angeliek: ‘It started with signs that did not seem alarming at first, but kept coming back. Like a skin rash that looked like eczema. It began when Nienke and Celine were four months old. No matter what we applied, nothing helped. The pediatrician referred us to a dermatologist, but they were not too concerned either. Even though it kept bothering us, we trusted the specialist.

When Nienke turned one, we picked her up from daycare with a swollen eye. The family doctor thought it was an insect bite. But the swelling got worse, which was reason enough to refer her to the hospital in Harderwijk. Unfortunately, Nienke also got chickenpox. Not just a few spots, but her whole body was covered from head to toe. Looking back, that may be explained by LCH. Because this disease can affect the immune system, infections can sometimes be more severe.

Nienke had to go into quarantine and received an ultrasound. Then three doctors walked into the room, and as a parent you know: this is not good. My husband was with our other daughter at the time, so he could not be there. The next day we went to the Princess Máxima Center, and that was the first time we heard the word cancer. You think: What? It is my child!’

Not one, but two rare diagnoses

Angeliek: ‘At the Máxima Center, Nienke had to stay in quarantine again because of the chickenpox. Many tests were done, and more and more possibilities were ruled out: not this, not that… Nienke had blood drawn and underwent an eye biopsy. At that point, we saw the swelling decrease slightly. What exactly were we dealing with?

LCH was mentioned more and more often. It is a rare disease in which certain white blood cells can damage organs.

But at home, we had another girl with the same skin rash. So she also had to go through the full medical process. Based on her symptoms, we already thought: she must have it too. And that turned out to be the case. Celine had a scan, and the same disease was found in her hip bone and skin. She also had to start a treatment process.’

Trouble again

Angeliek: ‘Both Nienke and Celine were scheduled to receive chemotherapy for a year. So both had a port-a-cath placed. Everything in their treatments ran at the same time: prednisone, visits to the Máxima Center, and care at home. That made it manageable for us. They got through it very well. Of course, there were side effects, such as weight gain, mood changes, and a few short hospital admissions due to complications. Some days were harder, but overall they did well.

They each ended up with a special Bead Chain. Later, we can use it to tell their story, what they went through at such a young age.

After that year, we thought: it is over. The Flower beads were in. We could move on. But it turned out differently. Five months later, we went away for a week, and suddenly Nienke developed a discoloration in her other eye. We immediately knew: something is wrong. Scans showed that the LCH had returned. A new treatment process was started quickly.

Fortunately, Celine did not need this. She was examined and remains disease-free to this day.’

Emma Children’s Hospital (Amsterdam UMC)