In 2015, Winnie was a happy carefree student, enjoying dance practices with her friends, and in her first year of A-Levels. But all that came to a stop when she was diagnosed with Acute Myeloid Leukaemia. Thankfully, three months later after a challenging treatment process, Winnie found a perfect match from a stem cell donor in Taiwan and is now in her fourth year of being cancer free, currently pursuing a degree in Psychology.
The cost of the procedure, however, was very high, where SCCS stepped in at the time to help with this. In addition, a perfectly matched donor is very hard to find, as very few Malaysians and even fewer Sarawakians have signed up to be stem cell donors – at the beginning of 2019, there were only 725 registered donors from Sarawak. Now, the Society aims to increase the number of Stem Cell donors in Sarawak, so that more children with cancer can be helped. The Society organised 6 Stem Cell donor drives in 2019, signing up 311 potential donors. We’re continuing this mission in 2020, and with your help, we’ll be able to give children with cancer a better chance at survival. Sign up to register your interest and be informed of the next donor drive near you, at http://bit.ly/SCCSStemCellUpdate
2019 saw a number of upgrading works for SCCS where RM50,000 was used to significantly upgrade areas in the children’s cancer Ward 2A at Sarawak General Hospital, to create a nurturing and safe space for children’s activities, and sharing and counselling sessions.The doctor’s room and daycare area was also upgraded. The upgrading plans also extended to Sibu Hospital where RM38,000 was spent at the paediatric ward on ceiling repair works, installation of a customised air conditioner, and a new toilet for the isolation room used by childhood cancer patients during their treatment.
Caregivers can go through a lot of stress as well, during cancer treatment. To help with this, we started two consistent activities for recreation at the ward, especially for the caregivers. The first is a partnership with Kolej Komuniti Kuching where caregivers are given an opportunity to learn a new skill that could potentially help with their household income, while also enjoying the stress relief benefits that come with craftwork. The teachers come in every month to conduct the classes, and items taught range from keychains and coasters, to small bags and earrings. Volunteer Zumba instructors also come in twice monthly to engage caregivers in Zumba sessions, allowing them to receive much needed exercise and improve their health to take care of their loved ones. With these two activities, we hope to improve the mental and physical health of the caregivers in this challenging journey of caring for a child with cancer. “You tend to overthink and stress out much more easily, caring for your child in the hospital environment is really challenging,” said Mdm Nacha, mother of a patient from Bintulu. These activities really help to reduce the pressure we put on ourselves, I’m really thankful for these moments of relaxation and hope it can continue to help other moms as well.”
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In our 2018 visit to the Childhood Cancer International conference in Japan, Dayang Zubaidah, a 2-time cancer survivor, was inspired by her experiences in talking to and learning from childhood cancer survivors from the world over, who had formed survivor groups in their own countries. Listening to their stories brought the realisation that childhood cancer survivors have many issues of their own, and still need much support and education even after treatment. With the help of SCCS, she and other childhood cancer survivors who met at the yearly Youth Camp organised by SCCS, came together to form Heroes of Hope.
Since then, the Heroes have been carrying out activities at the ward to bring joy and hope to the fighters, and also joined classes for self improvement, which are in line with their mission of supporting survivors and fighters, as well as continuously developing personal and professional skills. Says Md Fahkri, a childhood cancer survivor in charge of Development in the budding group, “Being a childhood cancer survivor inspires me to support all childhood cancer fighters, and help them and their parents, physically and mentally, in fighting cancer. I also want to change their thoughts about cancer especially their parents because most parents usually thinks that if anyone had cancer that person will die because of it. Joining HoH gives me the chance to do this, and make a difference.”
We at SCCS understand the need to develop and grow our programs and services for our little fighters, to ensure every sen is put to the best use. That’s why, since 2017, we have been sending representatives to the global Childhood Cancer International conference, where members of childhood cancer parent organisations from around the world gather to share knowledge on improving practices and developing stronger support programs for patients and their families. We’ve since developed the childhood cancer survivor passport, a document for each cancer survivor to better understand their treatment history and be more aware of the potential risks or late effects that could come from the previous disease and treatment received, which we provided to more than 70 survivors since it was made available in July 2019. A nutrition booklet was made available to encourage caregivers to provide balanced and healthy meals for their families, and, under the guidance of SCCS, a number of survivors have started a support group named Heroes of Hope.
Are you excited for this year’s GoBald? We will be announcing launch dates in late March, do stay tuned! We’ve also got something special planned for you, to make raising funds easier. Get updated at fb.com/gobald.my
We’re always excited to meet new people and tell them our story. You can help us reach a wider audience to make a greater impact on supporting childhood cancer patients, by putting us in touch with your company, school or local organisation to give a talk about childhood cancer, and SCCS. Contact us today to find out more at firstname.lastname@example.org