'My girl had only 9 to 12 months to live'
- Sheetal Kulkarni, from Carrum, Vic, tells the story in her own words.
Jerking awake, a terrifying scream tore through my house.
What’s that? I panicked, rushing to my daughter’s side. ‘Riaa?’ I soothed. Fast asleep, her little body writhed in fear. And as she woke up, she was inconsolable. About to start the first grade, Riaa, six, was riddled with nerves.
But my brave girl had never been scared of anything! Once she started class, Riaa’s behaviour became even stranger. Like a teenager, she’d back chat and slam doors. At night, she’d sleepwalk and scream as if she was possessed. ‘Maybe she just needs time to adjust,’ I told my husband, Vivek, 43. We even bought her a kitten to cuddle when she went to bed. ‘I’m going to call her Snowy!’ Riaa beamed. But nothing changed.
So I took Riaa to the doctor, hoping to get a referral to a psychologist. ‘Are her eyes always that big?’ she asked. Taking a closer look, my girl’s huge brown eyes were bulging a little. ‘Can you walk towards me?’ the GP asked.
Carefully placing one foot in front of the other, Riaa looked like she was balancing on a tight rope. I thought she was being a drama queen, but the doctor seemed very worried.
Driving home, my phone rang. 'You need to go to the emergency room now!’ she exclaimed. ‘What’s wrong with my girl?’ I asked, scared. ‘I think Riaa has a brain tumour…’ she replied. And with those words, my world crumbled.
Still, I forced myself to stay positive. She’ll have an operation and they’ll remove it… I reasoned.
That night, back in hospital, my girl was kept under observation. Turns out, Riaa had the most aggressive form of childhood cancer – diffuse intrinsic pontine gliomas (DPIG). A malignant golfball-sized tumour was growing on Riaa’s brain stem.‘It’s incurable,’ the oncologist said gently. Adding that my precious girl had only 9-12 months to live. I won’t give up on you I vowed.
With radiation, the tumour shrank. But Riaa was also put on steroids, which made her weight balloon. The drugs also fuelled my sweet girl’s anger. ‘Baby, are you okay?’ I cooed, as Riaa woke up from a nap. As my girl punched me in the face, my heart broke into a million pieces. Realising what she’d done, Riaa broke down. ‘I’m sorry, Mummy. I’m a bad person,’ she sobbed.
At first, the radiation gave Riaa some relief, but then our girl’s health began to spiral. Leaving our son, Aaryan, 16, in Melbourne with my parents, Arvind and Vandana, we took Riaa to Sydney for a clinical trial. Sadly, it had no effect. If anything, our girl was getting sicker. ‘Mummy, I’ve had enough. I just want to go to God,’ she cried.
Praying for a miracle, I reached out to renowned brain surgeon, Charlie Teo. ‘I can’t promise a recovery, but I can give you time,’ he said. Now, every second together was precious.Thankfully, our community rallied, helping us raise $100,000 on Go Fund Me.
After a six-hour operation, I tiptoed into Riaa’s room. Sitting up, she was belting out a tune from her favourite movie, Frozen.‘Let it go! Let it go!’ Riaa sang as a crowd of nurses gathered around. She’s back! I smiled. Riaa even went back to school. But just after her seventh birthday, an MRI confirmed our worst nightmare. Riaa’s tumour had grown again.
Just weeks later, our girl couldn’t walk. Quickly, she lost all function on her right side and her face began to droop.
‘We can’t just sit here and watch her die,’ Vivek pleaded. Secretly, he’d been in touch with Hospital Angeles in Monterrey, Mexico.
Riaa had been accepted to take part in a highly experimental treatment called intra-arterial chemotherapy. The drugs would be administered via a catheter in Riaa’s groin, connecting to an artery leading directly to the base of her brain. Each session cost $30,000 and Riaa would need at least ten. Months ago, he’d mentioned it, but I didn’t want to send my baby so far away. By now, we were bankrupt, but we’d do anything to save our girl.
In August, Vivek and Riaa boarded a plane, searching for a cure on the other side of the world. ‘I’ll see you soon, baby,’ I whispered, holding her tight. Vivek had taken a sabbatical, but I needed to keep working to fund our quest. Thankfully, a fortnight later I was able to join them for two weeks.Amazingly, after just one treatment, Riaa’s tumour had shrunk and she was able to grip with her right hand again. Saying goodbye once more, tears streamed down my face. Vivek and
Vivek and Riaa are still in Mexico but we only had enough cash for Riaa to receive half of her treatments. I had to keep fundraising. That’s why I’m sharing our story.
When my courageous girl grows up she wants to be a chef. ‘I’m going to have a café by the beach,’ she’d beam before she got sick.But I need your help to make Riaa’s dream a reality. All we’re asking for is a chance.
To contribute to Riaa’s treatment, visit gofundme.com/carrum-family-needs-help.
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