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Our inspiration and role model – Javier

Once again, Javier demonstrates that one can never be too young to make a difference. His 10th time participating in Hair For Hope this July, Javier’s selflessness and positive outlook on life has won him a Singapore Health Inspirational Patient Award given out by SingHealth this year. Check out his inspiring story here!

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Introducing: BTSS Rehab and Home Care (RHC) Grant

Dear BTSS Family,
In our continuing efforts to better serve the Singapore brain tumour community, I am pleased to announce the launch of BTSS Rehab and Home Care Grant. The objective of our RHC Grant is to help alleviate the costs involved in caring for home bound BT patients, as well as those who have to undergo prolonged rehabilitation therapy.

Requirements for Eligibility of BTSS RHC Grant

  1. You have to be members of BTSS
  2. Supporting letters from relevant doctors for home care services / rehab
  3. Check and then make a declaration or provide proof that the services you require are not covered by other subsidies or your existing insurance covers
For the purpose of the Grant, BTSS has fostered a partnership with Home Nursing Foundation (HNF). The services that they offer are listed below. You can check their website for more details https://www.hnf.org.sg. If you are a home-bound patient, you should first contact BTSS office via phone or email (8738 5669 or admin@braintumoursociety.org.sg) to obtain a copy of your application form for HNF services. Our office staff will then advise you of the process from there.
HNF will obtain the necessary governmental subsidy as payment for your services (through an arrangement BTSS and HNF have with AIC). The portion that is not subsidized may be partially covered by the BTSS RHC Grant. As a guide, BTSS reimburse up to 50% of the portion that is payable by you subject to a cap of $500 which must be drawn down within 12 months of approval (it will lapsed thereafter). When this $500 Grant is exhausted, you can put up another application for a further tranche of the RHC Grant provided you can provide evidence that the rehab has been effective or the home care continues to be needful.
If you require rehabilitation or home care service that is not provided by HNF or public healthcare institutes, you can also apply for BTSS RHC Grant, even for your sessions at private centres, which will then be considered on a case by case basis, provided always that our 3 requirements are met.

HNF provide nursing care in the following areas:

  • Health assessment including monitoring of blood sugar and blood pressure
  • Medication management
  • Administration of injections/loading of insulin
  • Nasogastric tube management
  • Urinary catheters management
  • Wound (including bed sores) and stoma care
  • Removal of stitches/staples
  • Negative Pressure Dressing
  • Patient/caregiver training

HNF GPs provide the following services:

  • Regular review of patients’ health status
  • Order and review diagnostic tests
  • Prescribe medication
  • Refer patients to other team members e.g. nurses for nursing intervention and/or therapists for rehabilitation interventions
  • Refer eligible patients to the Interim Disability Assistance Programme for the Elderly (IDAPE) and perform certification, if required.

HNF rehabilitation services include:

  • Physiotherapy
  • Occupational Therapy
  • Speech Therapy

HNF therapists visit the patients at their homes and the number of recommended sessions is largely dependent on a patient’s rehabilitation potential. The range of visit intensity is classified into three main categories below.

  • Home Rehabilitation (18 visits over 6 months)
  • Home Based Training (3 visits per year)
  • Home Environment Review / Home Modification (2 visits)
Please contact our office at 8738 5669 if you like more details and information.
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BTSS Core Values

As a diverse community, all of us in the BTSS family strive to be a source of support and community for each other.

To help us better communicate our ethos and provide guidelines for interacting with each other and our partners, we would like to introduce our core values. May these serve as helpful principals that can direct and shape this community of ours.

 

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BIG NEWS: BTSS is now Morgan Stanley’s Core Charity Partner!

Dear BTSS Family

 I am thrilled and proud to announce that BTSS has been selected by Morgan Stanley Singapore as their 2018 & 2019 core charity partner (I hear thundering applause and lots of cheers coming from you guys as I write this).

 Morgan Stanley would be our very first corporate partner coming after four years of hard work since our establishment in March 2014. Like me, you must be very heartened that we now have a strong global bank supporting BTSS in fund raising and volunteerism. What’s more encouraging is that the Morgan Stanley staff, whom I have met, resonate with our brain tumour cause and are eager to help BTSS make meaningful contributions that will yield greater impact on our community.

 As this marks a significant milestone for BTSS, our brain tumour cause and community, I am sure you would agree that a special celebration is in order. To do this, let’s all gather on the 12 May 2018 for the Morgan Stanley Charity Walkathon. Morgan Stanley’s leaders, employees and families will be raising funds for BTSS though this event and they have invited all our BTSS patients and families to join them on this joyous occasion to kick start our partnership.

 

Details of the event are as follows:

 Morgan Stanley Charity Walkathon

 Date: Saturday, 12 May 2018
 Time: 7.45am to 11.30 am
Venue: Bedok Reservoir Park, Tentage next to Carpark B (Nearest MRT: Bedok or Bedok Reservoir MRT )

 Light refreshment and water will be catered.

 Please register your attendance by calling Eric on 62912736 or email him at eric@braintumoursociety.org.sg by 23 April 2018.

 I look forward to you coming down to celebrate our important milestone partnership with Morgan Stanley (while getting some good exercise too).

 See you there!

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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.

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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)

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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…

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Terence

What? I have a tumor in my brain !

As with the desire of most Singaporeans, it is my great expectation to have retired after working for almost 40 years. During my working life as an office worker, it was rather common to have come across emotionally ‘headache’ situations from time to time. However, I cannot remember the last time I had a physical headache. Therefore I did not have to take MC during most of my working years. In fact, throughout my entire life I should have consumed less than an average of 1 panadol per year. I therefore have every confidence of the state of health of my brain.

After my retirement, I have signed up various health check programmes from time to time. One of them is the semi-annual eyes test. I still can maintain my perfect 6/6 vision for my right eye though the left eye keep failing in Vision Field test. After an MRI scan on 29 March 2015, it was discovered that there was a lump of tumor of about 18mm diameter. It was classified Pituitary Adenoma. I was told by the doctor that it was pressing on my optic nerve and hence I failed in my vision test. The bad news was that surgery is the most effective way to remove it.

On being informed that surgery is needed, the doctor has cautioned that my eyes could become blind if the tumor grew and totally pressed onto the optic nerve. On the other hand, the side effect of the surgery could mean

(i) blindness could still happen if the optic nerve were damaged during surgery,
(ii) partial stroke can happen due to disturbance to other nerve,
(iii) leakage of brain fluid could happen in the process of removing the tumor,
(iv) infection of the brain lining if damaged and
(v) hormone secretion problem in the pituitary gland.

Faced with so many risk factors, I was quite in a dilemma as to decide whether to proceed with the surgery. The following weeks were all spent on finding out more information regarding the tumor and evaluate the risks and benefit of the surgery.

Finally I decided to proceed with the surgery through the noses (transsphenoidal surgery) in early May 2015. The surgery was successful but it was unfortunate that brain fluid leakage occurred, ‘fat grafting’ from my stomach was necessary. It was also awful to have the noses blocked up and breath through the mouth for the first night after surgery. Luckily, knowing how to swim helps a lot. I was warded for 7 days.

After discharge, I could really experience how a physical headache look like in the second week! I also lost the sense of smell for about a month – so during this period all public toilets are pleasant to use, also eating durians without sensing its smell!

Thank God that the headache has gone and my noses functions have almost recovered. The only outstanding issue now is my hormone level need to be closely monitored as the surgery was done next to the master gland. I will have to consult the Endocrine doctor for the rest of my life.

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Aloysius

aloy

An Inspirational Story of Aloysius & Denyse…

My fiancée & I were making plans for marriage when I met with a cycling accident in December 2013. I passed out from the accident and was admitted to hospital. Brain scans picked up a mass in my brain. The MRI confirmed the tumour and I was diagnosed with a Trigeminal Schwannoma. As I was not experiencing any symptom, I could not accept my condition. Over the next nine months, I sought medical advice from various doctors; the consensus was to have surgery. It took me some time for me to accept that I had to take this step, through a combination of support from my fiancée and my parents, my new found faith in God, friends in church, and finding out more from others who had been through the journey such as Melissa Lim, founder of BTSS.

On September 2014, I went for the operation to remove my tumour. Over the next six weeks, I had to re-learn even the most basic of human tasks such as walking through twice-daily physiotheraphy sessions. I suffered the after effects of facial paralysis, loss of hearing, double vision, dry eyes, walking unsteadiness, nausea, vomiting, dizziness & headache. I am pleased to say I am healed of most of these symptoms and my health is getting better as the days pass. I am no longer on medication but I still have regular visits to the neurosurgeon for follow-up. I was very fortunate during that period to have support and encouragement from my parents, fiancée and the BTSS members who took turns to come visit me almost every other day. Their encouragement and advice for gave us more information and insight how to go through the entire process.I have stopped cycling and have switched to light exercises such as stationary bikes and jogging. I have also picked up more therapeutic and stress relieving hobbies like reading and playing the piano.

Denyse and I were married on February 2015, 5 months after my operation. Before my diagnosis, we have been together for 12 years. We have been through many ups and downs, although my medical condition was a major life challenge, it wasn’t something we could not overcome together. I am blessed my religion has helped me through this journey. Now I have a new role as a husband, I have to live strong not just for myself but also my new family. I am feeling great and appreciate every single day.

BTSS has helped me in understanding that I am not on this journey alone. Through meetings with other survivors and patients, we share our stories and motivate each other during this journey. Sometimes it can be tough to share our feelings and thoughts to our family and friends who have not been through this. The talks and the sharing from the nurses during the BTSS meeting has also helped me to get more insights into what brain tumour is all about, the things to look out for, what can be done to improve the quality of life.

I am often reminded of this quote:
It ain’t how hard you hit; it’s about how hard you can get hit, and keep moving forward.” ~ Rocky Balboa

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Jeff

I was knocked down by a taxi while cycling on 7 Dec 2012. During the emergency operation to fix my broken pelvis, spine and lower right leg, a CT scan showed there was some white mass on the left frontal lobe of my brain. The doctors thought it might be a blood clot due to the accident and decided to monitor it. I had another surgery in April 2013 and took an MRI after that. The MRI then showed I had a brain tumour, the diagnosis was “suggestive of a low grade oligodendroglioma”. As I was feeling fine and did not display any symptoms, I was advised by the NNI doctors to wait and see how the brain lesion progressed.

In Jan 2014, I started feeling unwell with giddiness, headaches and fainting fits. I was admitted twice and the CT scans/MRI showed that the tumour had already increased in size. I was devastated, as if recovering from my accident wasn’t bad enough, I was facing cancer of the brain. In February 2014, I underwent a craniotomy. A biopsy confirmed that the tumour was an anaplastic astrocytoma. My doctor quickly referred me to NCC for chemotherapy & radiotherapy treatments. At NCC, I started on daily radiotherapy with adjuvant oral chemotherapy for 6 weeks (30 times). After this grueling treatment, I rested for 1 month before starting another 6 cycles of chemotherapy. I have completed the treatment but continue to go to NCC for regular MRI every 3 months and I have to be continued on medications to prevent the occurrence of seizures.

My cycling accident and discovery of the brain tumour turned my life, and that of my wife’s, completely upside down. My wife, Patricia, had to quit her job to look after me full-time. An active sportsman before my accident, I can no longer enjoy physical activities such as rugby, jogging and sailing. I still cycle, but only along park connectors for short distances and with Patricia by my side. As for income, I now work from home, running my own paper trading business.

On the bright side, I have not felt nauseous since my brain operation. People say you can only declare yourself cancer-free after a 5-year period. I say each day is a blessing. It has brought Patricia and I closer, as we spend a lot more time together. Having a positive mind, building up your immunity, and keeping a healthy, organic diet are all important to people recovering from brain surgery. Drink plenty of water, this is the secret to life.

I am very glad for the monthly BTSS support group meetings where I meet other patients. Having to share my story, I have opened up about my misfortune and in return, I find that I am not alone in this journey, there are many others with greater need than I, and by sharing, I am in a position to help them.

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