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 KINO CHILDHOOD CANCER 
MY SON HAS CANCER
BY FIONA MARCUS RAJA

I hope this is never you. I never thought it would be me. But the unthinkable has happened and I have transitioned from a fulltime working mother of three beautiful boys to a fulltime caregiver to my child who is fighting for his life. Our lives have changed forever, from the moment I picked up my phone to hear my husband on the other end of the line, his voice all shaken, uttering the worst 3 words I would ever want to hear: “ROYCE HAS CANCER!” Of course there is no way to truly convey how you feel as a parent when you find out this is your reality. And I hope you never have to fully understand.

I have had so many people ask me what Royce's symptoms were and how, in two weeks, he went from seemingly perfectly happy and healthy to this. The answer is: I don't know either! It started innocuously with Royce complaining of tummy pain and then 5 minutes later he'd be running around like a crazy person again. I let it go. Normally I am super-paranoid about anything that isn’t right with the kids or myself or in fact anyone in the family. I’ve visited all the clinics in KPJ at least once for some discomfort or pain! Prior to the diagnosis, he had been admitted a few times – dehydration, suspected HFM and then tonsillitis. We even went to see a Chinese physician as a second option. But nothing seemed seriously out of the ordinary. Then, he began losing his appetite though was still very active and naughty. The doctors said this wasn’t uncommon for toddlers and I thought back to a similar phase in our eldest, Ryan, when he refused everything. I consoled myself to not be paranoid. But a few days later, while I was giving him a shower, I realized that he had lost so much weight, his collarbones and rib cage were showing; he couldn’t walk, or even stand straight. This didn’t feel right. I had a flight to catch to Singapore that morning, but I rushed to get him admitted for some tests. I got on the flight to Singapore with a very heavy heart. Something didn’t feel right.

                            Testing, treatment, visits in and out of hospital; x-rays, ultrasounds,
                                  MRIs, biopsy, keyhole surgery and finally, chemotherapy.

While I was walking on Orchard, I received the phone call from my husband.  I was shaking; I didn’t allow myself cry. So many questions; so many details that seemed insignificant at the time, suddenly started making sense.  The size of the tumor was so big - I nearly passed out when Dr Siew said 10cm x 11cm in his abdomen. It was definitely cancer but we weren’t sure if it was Wilms’ tumor or Neuroblastoma. First I called hospitals all over Singapore, making appointments and arrangements.  Then, I picked up my phone and called the first person I needed by my side.

       
                      I often had to hold Royce down for a procedure with him yelling out:
                                         ‘Why?  No, Mummy, no!  I don’t want!’

                
                            "The tumor was so big, but we weren't sure if it was Wilms’
                                                       tumor or Neuroblastoma..."
   

My mother. I called her in Canada at 3am Canadian time. After I heard her voice, I broke down at last and started crying and told her I was scared and I didn’t know what to do. She asked me if I wanted her back; I said yes! My mum and my step-dad took the first flight they could get on to Singapore to meet us.

That night I stayed at my uncle’s house and cried my heart out the entire night; I couldn’t eat or sleep. I kept blaming myself for letting my guard down. The one time I let it go, the one time I reminded myself that I shouldn’t panic and consoled myself that it could just be a tummy flu or a phase, the worst thing that could happen, had happened. It was killing me inside to know that I couldn’t hold my child in my arms now. I so wanted to wrap my arms around him at that moment. My poor baby. My poor child.
I spent a sleepless night, scared, tearful and bewildered with the alarmingly low survival rates, treatments and stages of Neuroblastoma swirling in my head. As strange as it may sound, we were hoping for Wilms’ tumour, which 9/10 children survive. We had gone from the excitement of organising my youngest son’s first birthday to potentially having a very sick child in the space of a couple of days. I kept asking myself how could I have not known.

And so it began. Testing, treatment, visits in and out of hospital; x-rays, ultrasounds, MRIs, biopsy, keyhole surgery and finally, chemotherapy. Neuroblastoma was confirmed - 3rd stage neuroblastoma and it had N-myc amplified genes. Our lives were turned upside down. Children with cancer are often described as brave but the reality is often difficult and painful and simply unfair. At only 2 years old, we never sat him down to tell him that he had cancer. We took the fight day-by day. He didn’t understand what was going on but in the most part somehow grasped everything that should happen. So, if the nurses didn’t complete a procedure properly, he wouldn’t stop crying. As soon as they did, he would smile and wave them goodbye. But there were dark days. I often had to hold Royce down for a procedure with him yelling out: ‘Why? No, Mummy, no! I don’t want!’ There were days of high fever, seclusion at home, diarrhea, vomiting and, of course, endless drugs and tests. Hospital visits became something we got used to - bag was always at the front door.

             

It has shattered the rhythm of all our lives. We went from having a schedule to not being able to spend time or even talk to my two other sons and check how they were doing in school. We were thankful to have my entire family helping out to hold our life together. Everyone helped out with care, accommodation, laundry, comfort.  Even so, after two months, I realized I had run out of energy to catch up with my work, so I closed my businesses one by one.  As our bills mounted, we began to live very moderately. Friends and family pitched in with fund-raisers and donations to help out on our medical bills. Especially for young parents like us, cancer can wipe out a family's savings. By the 6th month they were gone. Imagine spending in Singaporean dollar when we were only earning in Malaysian Ringgit. 

                We were thankful to have my entire family helping out to hold our life together.

For the entire year since July 2nd 2014, I have given up my entire life to take care of my sick child. Everyday we are set with new challenges and new things we have to learn. I hate cancer. I really do. I wish it were I bearing the pain instead. But one other thing has changed. I used to wish that he would forget all this, forget all the pain he suffered. Now, instead, I want him to be reminded about this journey, to share his stories with others and to help others who face the same challenges as he did. Because we must not keep quiet about childhood cancer, we must spread awareness of the things I wished I knew more before the day I found out Royce has cancer.

Fiona Marcus Raja has been a successful business woman including being the Managing director of the Sarawak Cruise until the day Royce fell sick. This mother of 3 - Ryan, Royce and Ryder - now dedicates her time to caring for her children. Born in Kuching, she is currently staying in Toronto for Royce’s medical treatments.

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