‘At the age of one, our twin daughters were diagnosed with the same rare diagnosis: LCH.’
Nienke and Celine (4) were just one year old when they were diagnosed with langerhans cell histiocytosis (LCH). Each year, ten to fifteen children in The Netherlands are diagnosed with this disease. ‘How bizarre is it that I have two of them at home? The chances of winning the lottery are higher,’ says their mother Angeliek.
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.’
Under control
Angeliek: ‘In total, we spent more than three years in and around the Máxima Center. Nienke and Celine arrived in a Maxi-Cosi and are now walking out on their own. It is a roller coaster, and you go along with it. You have to. You want to protect your children from things like this, but unfortunately you cannot take it away.
Thankfully, we have a strong support system, and Celine and Nienke have come through it well. If you saw them on the street now, you would not know what they have been through. They swim, argue, go to school, play with friends, and do everything the same. A true twin.
In six months, we have another scan. I have to admit that I am very alert. If they are tired, I wonder: is this normal tiredness? Or something else? I do not think that focus will ever go away. What helps me is talking about it a lot with people around me. I do not keep things bottled up.
What I really appreciated at the Máxima Center is the open and honest way of communicating. The doctors were direct and said things as they were. Communication was clear and honest, without creating expectations or speculating.’
Also read:
- ‘My mother’s intuition told me something wasn’t right. Sem had COVID, but also leukemia.’Sem (3) has leukemia. His mother Miranda (35) talks about the road to the diagnosis, those first days at the Princess Máxima Center, and how she tries to stay grounded as a mother. ‘Trust your instincts, write things down, and take time for yourself now and then. That way you can be the best version of yourself for your child and the rest of your family.’
- ‘I was too afraid to ask the doctors any more questions because I was so scared of the answers.’Lauren was five months old when she turned out to have leukemia. The fear her mother Britt felt was overwhelming. How do you cope with that? Talking with the psychologist at the Máxima Center helped, but that was not the only thing. Britt shares her story, and her tips for other parents.
- ‘Despite everything Loek has to go through, he still feels at ease at the Máxima Center.’Loek (2) was not yet a year and a half old when he was diagnosed with a Wilms tumor. His life, and that of his parents, sister, and brother, was turned upside down overnight. Suddenly, everything revolved around Loek’s recovery. His mother Sanne and father Roy say: ‘He remained the cheerful toddler who kept adapting time and again. His resilience gave us strength.’