Something was not right with my two-year-old, but the ‘C’ word never crossed my mind. This is my story of parenting a child with cancer in Singapore “The results came back. Damien has cancer…”
Time stood still, I froze while standing beside his cot. My heart was thumping so loudly, my hands went cold. The doctor continued talking, but I couldn’t hear anything at all. It was all muffled and I remember just looking at Damien asleep. Damien was going to be two years old in three weeks time. I had just sent his birthday cake design to the shop the weekend before and was hoping he would be well in time for his birthday celebration.
Cancer? How can this be happening? And to my own child? How can children get cancer?
Something was not right, but the ‘C’ word never crossed my mind
Damien started playschool in February 2018. In the first 2 months, he kept getting low grade recurring fevers every 1-2 weeks without other symptoms. It is common that children start falling sick once they start school, so I figured it was nothing to be overly concerned about.
In April 2018, he tripped over a chair at home and on that same day, he came down with a fever. He couldn’t walk and said his legs hurt. We noticed a slight swell so we took him to the Children’s Emergency at KKH Women’s and Children’s Hospital. Although there was no major fracture, the doctor put a cast on his leg to let it rest and heal. During the two weeks with his cast on, Damien continued having recurring fevers. After the cast was removed, Damien still couldn’t walk for nearly a month. Each time we practiced walking with him, he said it was painful. He then started saying his other joints hurt. There were occasional little red spots appearing on his body (Petechiae spots – another term for Leukemia spots) and I also noticed lumps at the back of his neck. With various symptoms happening so often, I knew something was not right. My husband Andre and I were determined to find out what was wrong so we brought Damien to our PD and requested for a detailed blood test. That same evening, the PD called and said the results showed he was anemic. He suggested we go to the hospital and get a specialist to check Damien out. I managed to get an appointment back at the Bone Clinic at KKH quite quickly. I wanted them to find out why Damien still couldn’t walk and whether it was linked to his other joint paints and anemia. The X-ray results came back and the bone doctors were surprised to see that Damien’s leg muscles had deteriorated. They had to ward us immediately to do more tests. I started to worry more, but still the word ‘cancer’ didn’t cross my mind.
Once in the ward, I repeated the same medical history numerous times to different doctors. More blood tests were done followed by a bone marrow aspiration. Two days later on 2 June 2018, we were told Damien had cancer. In that instance, Childhood Cancer entered into our lives.
Damien’s cancer treatment in Singapore
Things moved quickly after his diagnosis. There wasn’t a lot of time to grieve as there was so much to do in terms of settling insurance matters, hospital paperwork and understanding the treatment protocols. We also had to prep our home to ensure it was a sterile environment for Damien when he was discharged. Our priority was to get started on his treatment quickly. Damien started on steroids, lumbar punctures (where chemotherapy was injected into the spine), and regular blood tests. He also had a surgery to insert a portacath in his chest for chemotherapy purposes. We spent 12 days in the hospital before he was finally discharged.
What followed was six months of intensive chemotherapy. The hospital became our second home. There were frequent hospital stays and in between you get unplanned hospitalisations. Children undergoing chemotherapy have weakened immunity. The slightest bacteria can result in a fever. Whenever Damien gets a fever, he needs to be admitted for a minimum of 48 hours in case of infection. Our hospital bags were always packed and on standby at home. We were in the hospital so often that there were occasions I was home for only a week in that entire month.
Damien also experienced various side effects from the chemotherapy: Skin tears in the bum, hair loss, vomiting, diarrhea, constipation, headaches, nauseousness, loss of appetite, insomnia, mood swings, shaky hands. At times, he was bloated like a balloon because of steroids, and then chemotherapy made him look pale and thin.
After the intensive chemotherapy phase, we moved on to another 1.5 years of maintenance therapy where he received lower doses of chemotherapy and shorter periods of steroids. We still had regular visits to the hospitals to keep tabs on his blood counts.
Embracing the new normal
For infection control reasons, Andre and I stopped social interactions and visits from friends and family throughout Damien’s intensive chemotherapy. We only went out to get essentials and it was usually Andre who would do that. We didn’t want to risk catching anything and passing it on to him since his immunity was weak. We relied on video calls to stay in touch with family. I also used social media to share the good and bad days and the little joys throughout Damien’s cancer journey. I found this a great way to update our friends, but more importantly, I wanted to share our story and create awareness about the reality of childhood cancer.
Wearing a mask daily at home and outside, sanitizing our hands frequently and wiping down everything with alcohol wipes became a norm for us. As Damien could only eat homecooked food, we did the same together with him for every meal. I would look at various recipes and adapt it to suit his taste buds. Homecooked meals minimised us falling sick from food poisoning and it also reduced having outside food smells in the house that might trigger nauseousness for Damien.
Parenting a child with cancer
Damien’s childhood was flipped upside down the moment he was diagnosed. Friends ask how we managed his toddler years with cancer? How did we parent while supporting him through his treatment and allowing him to be a child at the same time?
We talked openly and honestly with our child about cancer
Damien was only two years old when he started chemotherapy. Despite him having limited vocabulary, he was always listening to our conversations. From the moment he was diagnosed, we talked openly and honestly to Damien. We did not sugarcoat our words nor lie about the fact that he was not well and the procedures he will have to go through. Of course, we explained things to him in simple words that he could understand but we made sure it was as accurate as possible.
We learnt that empowering children can help them feel less anxious. So where appropriate, we allowed Damien to use the thermometer to take his own temperature before we did it. Before taking his blood pressure, we will ask whether he wanted to place the cuff strap on his leg or arm. We allowed him to help the nurses do simple things like pasting tape or peeling the plasters. We also gave him spare syringes or plasters to play with. We gave a name to his IV pole. We called it the “choo choo train’’, so he understood it will trail behind him wherever he went in the hospital. To help him familiarise himself with the medication, we would tell him the names of the medication before we gave it to him, and after he finished a bottle of medicine, we would wash the bottle and give it to him to play. As we drew nearer to the last day of his oral medication, we would draw up a countdown calendar so he can cross out the days leading up to the last day of medication. I baked his favourite muffins and we had candles on them to celebrate the last day of chemotherapy. He understood what was going on, he felt the anxiety and knew pain, but he also celebrated his own bravery and victory after.
We showed him the hospital was our community
We showed Damien through our own actions that the hospital was not a scary place to be and that the doctors and nurses were there to help him get better. We made it a point to know everyone at the ward including the housekeeper and food service staff. Our interactions and light-hearted conversations with everyone put Damien at ease. We also had simple celebrations in the hospital. For example, during National Day, we brought flags and played NDP songs for Damien. On our wedding anniversary, we brought in a foldable table covered with a tablecloth and Damien ate his hospital food at the table together with us. Over time, we noticed Damien became very comfortable with everyone in the ward. Sometimes, I find that he looked forward to hospital visits as this was his new-found community.
Maintaining the same expectations of a child with cancer
We continued inculcating values and didn’t give in to everything just because Damien had cancer. We instilled in him respect and manners such as saying “hello”, “please” and “thank you” to the nurses, doctors and even the housekeeper who came to clean our room. When it was time to return the toys he borrowed from the hospital playroom, we will get him to carry some and return them. He wore his own shoes, learnt to fold his own blankets and packed up his toys.
When it came to tantrums, we were consistent with being firm and will teach him what is right and wrong. While he was on steroids, his emotional tantrums became greatly affected. We adjusted accordingly and reminded ourselves the reason for his sudden outbursts and behaviours.
Creating positive experiences
Hospital stays could last from four days to 10 days and sometimes Damien wasn’t allowed to leave the room because of his fevers. Despite being confined to the room and being homebound for six months during his treatment phase, we didn’t overindulge him with toys or screentime. Instead we offered as much playtime, read lots of books, colouring, painting, pretend play and created positive experiences for him. We couldn’t go for picnics so we did balcony picnics. He couldn’t play sand at the beach so I bought indoor play sand for him to play at home. We built a small tent and pretended we were all camping in the living room.
Damien couldn’t eat store bought cakes so we made pancakes and stuck candles in them for birthday celebrations. We took every chance to celebrate and decorate our house for various festivals. Damien seemed to enjoy cleaning, so we would give him a small pail of water, sponges and cloths and he’ll clean his toys on the balcony. We involved him in simple household chores and he thoroughly enjoyed it. I remember during Christmas, when his blood counts were good, we would take him on car drives so that he can enjoy the Christmas lights from inside the car. Despite cancer, we found as many opportunities as possible for him to feel normal and happy.
We were generous with our affection
During Damien’s intensive treatment, we didn’t kiss him on his cheeks like how most parents would to their child. Many times I wanted to, but I held back to minimise passing anything to him. But we made up for it by saying to him so many “I love you’s” daily and laying down by his side so that he could feel our presence. I cuddled him in my arms and sang a lot of songs to him to put him at ease especially before a procedure.
Sharing Motherhood with Childhood cancer
Every motherhood journey is unique where it is filled with joy, trials and challenges. To be told your child has cancer is gut-wrenching and devastating, but it was still motherhood. I had to navigate this new uncharted territory as a ‘Cancer Mom’. Instead of organizing playdates, heading out to the playground, having a splash in the pool or going for family meals at restaurants, I was spending days in the hospital sleeping next to Damien’s cot. I will be catching his puke in the bucket, and holding him down while he gets pricked and poked. At night, I was on the Internet and reading stories on everything relating to childhood cancer and lose sleep after.
I struggled with insomnia for a year but I coped because I had to. I was running on adrenaline to fight this battle alongside with Damien. My role as a full-time caregiver to a critically sick child, to protect, to be familiar with the medical procedures, and to stay strong and positive amidst all this was not easy. I got emotional and cried at night. Sometimes when I see another healthy-looking two-year old and it reminds me of my own child spending his time in cancer treatment, the pain spills over and I slip. But I wake up the next day and start again. I had to put on a brave front because it was my child. Sometimes, as a ‘Cancer Mom’, you could only find understanding in the presence of others who have gone through the same. I am truly thankful for the friendships formed with other ‘Cancer Moms’. We saw the reflection of pain behind each other’s smiles and being able to give that support helped us through the journey.
What have I learnt from parenting a child with cancer?
Damien entered remission in August 2020. We are so thankful that he has responded well to the treatment. Even though treatment is over and he is a cancer survivor, there is still that threat of relapse. The constant worry of relapse is hard to ignore, but I live for the present and am thankful for the smallest and simplest joys. To be able to wake up and see him is a gift. Childhood cancer has taught me gratitude and contentment. I see this in Damien too. Having gone through a battle with cancer, he doesn’t demand for more than what he has. Being able to have a 10-minute walk outside of the hospital room, to have strength to stand up and look out of the window and see children play or just enjoying some ice cream is good enough for him.
In these 2.5 years, I have offered caregiver support to newly diagnosed families and been involved in activities with the hospital and various foundations and organisations to support childhood cancer. Through sharing, I hope our family’s journey with childhood cancer will be an inspiration for all families who are navigating their own childhood cancer journey.
Support & resources in Singapore
- Children’s Cancer Foundation Singapore
Founded in 1992, CCF provides children with cancer and their families the much needed support in their battle against the life threatening illness. The foundation has various programmes catered to support families, caregivers and even siblings of children with cancer. They also offer activities to children seeking treatment in the hospital and also cancer survivors. I signed up for the Caregiver Support Programme with the Children’s Cancer Foundation and have been talking and offering support to newly diagnosed families.
- Arc Children’s Centre
Arc is an independent charity daycare centre dedicated to enriching the daily lives of children who are braving cancer and other life-threatening illnesses, and their families.
- VIVA Foundation
VIVA Foundation for Children with Cancer is a Singapore-based charity which focuses on saving lives of children with cancer through research, medical care and education.
Other organisations in Singapore that also support children with cancer:
In terms of resources, I found Childhood Leukemia: A Guide for Families, Friends & Caregivers, by Nancy Keene very useful, and it took us through our entire journey. It was our first resource as it contained a lot of relevant information.
We also read The Famous Hat” by Kate Gaynor very often to Damien. He loved it and it was very suitable to help young children prepare for chemotherapy treatment.