In 1980, Roelien gradually became deaf. After a CT scan revealed a small abnormality in her balance nerve, she was referred to a specialist. Following another CT scan, she was diagnosed with a pontocerebellar angle tumor, a benign growth. While her primary care doctor believed the situation was not urgent, the neurosurgeon had a different opinion, insisting that surgery was urgently needed due to the significant risks involved.
On January 19, 1981, Roelien underwent surgery. The operation went well, but the pathology report revealed that it was not a pontocerebellar angle tumor but a chordoma—a rare, yet, according to neurosurgeon Dr. Pondaag, benign embryonic bone tumor that often recurs. As a result, she needed an annual MRI scan. At the time, information was scarce, and little research had been conducted on the condition. Roelien had no access to the internet to look up information, so she relied entirely on her doctor. By persistently asking questions, she obtained the critical information she needed to make decisions about her treatment.
After five years, the chordoma not only returned but had also shifted and grown. Another surgery was deemed necessary, and, as before, the tumor was approached from the back. Roelien inquired about the risks, which turned out to be the same as last time. Fortunately, like the first surgery, the procedure went well, and within a week, she was back home with her husband and four young children.
Unfortunately, six years later, the tumor returned again. This time, the doctors decided to approach it from the front. The surgery went relatively well, but Roelien experienced slight paralysis and numbness on the left side of her face due to minor damage to the trigeminal nerve. Two years later, another operation was needed to remove the screws and plates implanted during the previous surgery. However, not everything was removed, requiring yet another procedure.
Despite these challenges, Roelien maintains an incredibly positive attitude and is grateful for the resilience that helps her cope with the recurring chordoma and its consequences. Her faith is a major source of strength. After the initial diagnosis, she was deeply emotional for several days as a young mother. However, she found comfort in Psalm 27:7:
"If I had not believed that in this life, My soul would enjoy God's favor and help, My God, where was my hope, my courage gone? I had perished in all my grief and mourning."
From that moment on, she felt acceptance and confidence that everything would be okay. Remarkably, this feeling of peace returned before each operation.
In 2007, the tumor reappeared and seemed to be growing slowly. By then, surgery was too risky due to excessive scar tissue and damage from previous operations. The doctor suggested proton radiation, though he could not provide clear answers to all of Roelien’s questions. Determined, she contacted the Paul Scherrer Institute (PSI) in Switzerland and arranged for proton therapy herself—undergoing 35 radiation sessions.
PSI arranged accommodations for her stay. Roelien brought her bicycle so she could get around and run errands. While the radiation caused severe fatigue, she soon regained energy and was able to drive again. She had to fight with her insurance company to get everything reimbursed, and she emphasizes the importance of advocating for oneself in such situations. She will require annual MRI scans for the rest of her life.
In October 2007, Roelien received a letter from PSI addressed to her treating physician in the Netherlands. The letter stated that, based on radiological examinations, PSI believed the tumor was actually chondrosarcoma, a rare form of cartilage cancer, rather than a chordoma. This diagnosis was later confirmed by pathological examination of tumor tissue from a previous surgery. This was good news, as the prognosis for chondrosarcoma was significantly better, and proton radiation offered a greater chance of permanent tumor control.
Unfortunately, her challenges did not end there. In 2008, she had to undergo surgery to remove a benign breast tumor. By early 2009, she hoped there would be no more recurrences. However, in February of that year, she began experiencing frequent vomiting and severe headaches. Doctors discovered a significant hemorrhage in the pontocerebellar angle area. Within a week, she suffered a second hemorrhage.
Due to the extensive radiation treatments, Roelien became completely deaf in her left ear. Fortunately, she found an effective solution through a hearing center. Using the CROS system, sounds from her left side are transmitted to her right ear. With the Phonak ComPilot around her neck, she can follow the news on television. Additionally, she uses the Belman wake-up and alert system for practical daily needs, such as hearing the front doorbell. These assistive devices greatly improve her quality of life, and everything is covered by insurance.
Over the past 42 years, Roelien has endured immense challenges. Throughout it all, her husband and children have been steadfast sources of support, and her faith has remained unshaken. She maintains a positive and grateful attitude, though she acknowledges that everyone needs an outlet. For Roelien, that outlet is her garden. It is her therapist—a place of peace and beauty, but also a space to process sadness or frustration. She remains highly active, tending to her garden, visiting the elderly, engaging in her church community, and raising funds for charitable causes.
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