On 13th June 2017, our world fell apart when our youngest son Toby, aged 4, was diagnosed with Stage 4 Brain Cancer – Medulloblastoma with Spinal Metastasis. 2 days later, he had his first major brain surgery to remove the tumor in his cerebellum. The surgery was successful but left him with severe posterior fossa cerebellar syndrome including mutism.
He could not talk, eat or swallow, move or walk, and his eyes seemed to register nothing. Thereafter, Toby went through 33 rounds of radiotherapy under GA, as well as a few more brain and surgical procedures. He battled Pneumonia and Meningitis and underwent 4 rounds of Chemotherapy and Tandem Stem Cell Transplant.
The Chemotherapy led to permanent moderate hearing loss in his right ear and severe loss in his left. The whole treatment process lasted 8 months with Toby and I staying in KKH, while Daddy and our 2 older boys fending for themselves at home. Today Toby is undergoing regular Speech and Physiotherapy. He is still unable to talk or walk but has learnt to swallow liquids. He enjoys watching TV and having giggles with his 2 elder brothers.
In June, I took Toby to KKH, and that’s how I found out about BTSS, and later Melissa added me to the WhatsApp Chat Group. This provided a lot of support for me as I was able to network with other mothers who were facing the same situation as me. It was therapeutic to hear stories from other caregivers, and what side effects their kids suffered.
BTSS helped me feel less lonely on this journey, and I received a lot of support. I enjoy seeing the support given and received within the BTSS Community, and this helped me through difficult times.