We discovered a squint in Rachel’s right eye when she was 5 months old. An MRI scan a month later confirmed that it could no longer be an infant development issue and revealed a brain tumour. Her doctors and we her parents did not want to take chances, an operation was scheduled the very next evening, to remove a large malignant tumour resting on her cerebellum.
As Rachel was too young to have displayed any of the common symptoms of a brain tumour, it was by true grace of conscientious medical attention at every step that the tumour did not spread to her spinal cord. She was pulled from the brink. Although most of the visible abnormal cells have been removed, we opted for an aggressive chemotherapy treatment as the risks of radiotherapy stunting Rachel’s physiological development was too high a price to pay. Coupled with marrow transplant, it was a painful, isolating and grueling 18 months.
Rachel also underwent a further 6 surgeries to either insert, remove or adjust a skull plate and 2 shunts to relieve fluid build-up in her cranium. Since then, Rachel has had annual MRI scans to monitor for relapse. When she was 10 years old, in Oct 2014, she was diagnosed with and underwent surgery to remove, a rare and benign but aggressive tumour (KCOT) on her lower left jaw. Rachel is now diagnosed as having Gorlin Syndrome, she has to reduce exposure to UV light as it increases the risk of skin carcinomas. Rachel has been in remission since April 2007.
She is attending a mainstream school and will sit for her PSLE in 2016. She can and is doing all physical activities except without exposure to UV radiation. She is doing PE in school as it is conducted in the Indoor Sports Hall. She loves music, dancing, singing, doing craft work and drawing very much as well. Swimming on clear sunny days was pure joy for Rachel. Now we’ve to sheath her from head to toe with UV protective wear and we still worry if we’re taking too much risks. Even though we have been exhausted by the toll it took on us as a family in the early years, we can’t ask for a more loving, compassionate, generous and happy child. Through her laughter, daily antics and resilience, we realize how tremendously fortunate we are.
BTSS has given Rachel opportunities to mingle with kids who are going through similar life-long medical experience. By sharing with other families, we have blessed others with what little we have and spared others much heartache and effort if they were to go through it alone.