Blog

Rachel

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.

Read more

Zhe Xian

For two months, we thought it was a stomach problem. Zhe Xian, then in Primary 1, would complain about severe tummy aches and vomit once daily. Occasionally he would complain of dizziness or headache that leave him incapacitated. He was not able to eat or drink for the whole morning. He has to miss school. Doctor and hospital visits became a routine, he saw various gastro specialists. But the symptoms of vomiting, headache/dizziness and tummy pain was getting worse and worse. On 8th May 2014, he was admitted to the A&E department after vomiting 7 times within a few hours. The CT scan revealed a brain tumour of about 4cm.

As doctors suspected the tumour was malignant, he had brain surgery 2 days later. It was confirmed as a high grade medulloblastoma cancer tumour. Without further treatment, the cancer was certain to come back. Zhe Xian’s next 14 months of treatment was definitely not an easy ride for him and the whole family. He could only drink very little fluid, his sleep was interrupted by powerful stomach pains, he developed a fear of tube and needle insertions, he lost his hair and around 40% mid to high frequency hearing on both ears, his vision was impaired. In July 2015, Zhe Xian finally finished his treatment. However he still requires regular MRI scans and follow-up with oncology, gastro, eye and ENT doctors as well regular physiotherapy

Life in the family has defintely been affected greatly, seeing our son suffer before and during treatment, and still suffering. Our younger daugter’s psychology has also been affected as all the love and attention shifted to her elder brother. In September this year, Zhe Xian has returned to his primary school, after months in Children’s Cancer Foundation PALS (Place for Academic Learning and Support) which helped prepare him for a smooth transition back to a mainstream school. Since he still feels some pain and weakness on his legs occasionally, we have arranged with his primary school to arrange a buddy to help him with his school bag and accompany him to take the lift to/from class. His mother is fetching him to/from school daily and she needs to be there to feed him during recess time. Since he can only take small and frequent feed as his stomach pain is still an issue, hence the school allows him to have a slightly longer recess period than the rest. He does crave for some of the food he loves like salad but he is still not allowed to eat them due to his low immune system.

We joined the Brain Tumour Society (Singapore) in December 2014 to seek help and share knowledge with others with similar conditions. Both Zhe Xian and his sister enjoyed the activities organised by BTSS a lot, such as the Brainy Car Rally and the BTSS Art camp

(written by Zhe Xian’s father)

Read more

Cheryl

Cheryl Christina Andrianus

A Journey of Fighting Against Teratoma Brain Tumor

Cheryl is a sweet 14 year old girl who is always cheerful and carried her positive-mind.

It all started on Chinese New Year 2015 during school holidays. Cheryl decided to take herself to a dentist to repair her braces and remove one of her extra tooth that was on a misplaced position.

2 days later, she felt something wrong with her eyes that everything looked so blurry and it makes her head spin till she barely walk. She thought maybe she’s been too hard for school, so she initiatively took a paracetamol and painkiller, then everything seems just fine.

Few hours later, it all started again with much worse pain. She vomited due to unbearable pain of headache and her eyeballs can’t be move nor rotate. We directly visited 2 eye doctors in Jakarta but they can’t figure out why her eyes are stuck. They said there is something wrong with the neurons, thus we are referred to visit the neurologist for further medication.

We were so disappointed yet confused with the response from the neurologist, he said that Cheryl was diagnosed with an autoimmune disease which is lack of calcium in her bones. Cheryl received a very long prescription in which we think is not suitable at all.

So with all our doubts, the whole family decided to take her for medical check in Singapore. First day, she was been proceeded to do a MRI and the next day went through blood-test. The result shows that the liquid in her brain does not flow and later diagnosed with a brain-tumor. This came as a shock to our entire family and the last thing that we could imagine was for our little sister to have brain cancer.

We were faced with difficult choices, with her condition that gets worse. Within days, she went through an operation to drain off the fluid from her head because apparently the tumor caused obstruction to the flow of fluid in her head. The tumor was also pressing against her visual nerves, hence the blurred vision. At the same time, doctor did a biopsy. We were hoping that it would be Germinoma, however the result was a Mixed Germ Cell (MGC). A malignant tumor (benign) that consists of Immature Teratoma and Pineoblastoma.

The only way to remove the tumor was through cranial surgery. Our family were totally not prepared, so we look for options and other opinions. We agreed to take Cheryl on chemotherapy, hoping that the treatment could shrink her tumor

After 5 cycles of chemotherapy, Cheryl was showing an improvement. She was cheerful, she got physically stronger and we were all convinced that her tumor must have considerably shrunk if not totally gone. However scans showed otherwise. After discussing with the whole family, we agreed that Cheryl require surgery if the tumor stays the same, and it would be best placed in the hands of the expert.

3rd August, The Pre-Surgery MRI was done early morning and still hoping that the tumor had gone. Much to our dismay, the neurologist told us that the tumor has grown doubled in size, meaning that the surgery will be riskier and more dangerous. The operation was estimated about 5-6 hours time. Nothing much that we can say, but praying for her best while she cries and wave slowly before going for operation.

6 hours passed, three doctors from OT come to tell that Cheryl needs more time for the surgery. Another 6 hours later, the doctors told us that the surgery went well. Cheryl’s entire tumor was surgically removed, with no bleeding, and the vitals are all stable.

Cheryl woke up within 48 hours and no drowsiness and this time she is able to recognize us. No memory loss, no stroke. The neurosurgeon said her prognosis was good.

After 3 week recuperation in hospital, today, Cheryl was discharged. We can see her improvement day by day, though gradual, there’s always something to celebrate daily. From the day she started the tube-feeding(NGT), the day her voice became clearer, the day she asked to try eating by herself, the day she ask for a walk, the day she come with us and eat normally (she is no longer fed via tube as I write this). We thank God for her second lease of life…

Read more