Real Life

“How could FIVE doctors have missed this?” Three-year-old’s rare form of cancer misdiagnosed as a virus

"Something is wrong with my baby," I said to my sister, Simone. "There has to be some explanation."
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Tears rolled down my son’s cheeks as he crawled into my lap.

“My tummy hurts, Mummy,” Ryder, three, cried.

I stroked his forehead as he doubled over in agony. It broke my heart to see him so upset.

“We’re going to get you better,” I promised, praying I was right.

For the past month, Ryder had suffered all sorts of aches and pains. It had started when he came home from putt-putt one day, walking with a limp.

Within days he was suffering night sweats and sharp pains in his knees, tummy and back.

“It’s just a virus,” the GP shrugged dismissively.

“It’s just a virus,” the GP shrugged dismissively.

As the weeks passed I saw five different doctors, but they all said the same thing.

“Something is wrong with my baby,” I said to my sister, Simone. “There has to be some explanation.”

At my wit’s end, I left my older son, Caden, four, at kindergarten and took Ryder to hospital. The doctor listened as I blurted out the story again.

Ryder before starting chemo.

“Normally I’d agree with your GPs,” she explained. “But since it’s been five weeks we’ll do a urine test and ultrasound.”

We stayed in hospital overnight and the next day she gave us the results.

“We found a mass in Ryder’s abdomen,” she explained. “We’ll need to look into it further to see if it’s cancerous.”

I dropped Ryder’s hand and stumbled into the nearby bathroom so he wouldn’t see me cry. There, I collapsed to the tiled floor sobbing.

Five doctors had brushed my fears aside but deep down I’d always known something was terribly wrong.

Specialists performed a biopsy and, days later, explained the results. “He has stage-four metastatic neuroblastoma,” the doctor revealed, saying it was an extremely rare cancer that forms in nerve tissue.

“It’s already spread to every part of his skeleton,” she said.

I blinked back tears and took a deep breath. “Could we lose him?” I choked.

She nodded gravely.

Doctors had already warned me that this could be the likely result and I’d researched the survival rate.

“Is there a 50 per cent chance I’ll lose him?” I asked.

“Yes,” she admitted.

“Is there a 50 per cent chance I’ll lose him?” I asked.

I felt my world collapse around me. For the first time, I couldn’t imagine Ryder growing old. Beating this cruel disease seemed impossible.

That afternoon, I was like a mad woman, taking dozens of photos of my boy. I was desperate to capture everything about him – his beautiful almond eyes, his cheeky grin, the way his blond hair fell over his forehead.

I couldn’t bring myself to tell him what was wrong. Instead, I cuddled him to my chest.

“Your sore tummy will go away,” I soothed. “The doctors will give you special medicine.”

Neuroblastoma patients require a six-step treatment, including chemotherapy, surgery, transplants, radiation and immunotherapy.

The chemo made him queasy and nauseous as his immune system was so fragile, Caden wasn’t allowed near his little brother. It broke my heart to see my boys separated and so upset.

Ryder, Caden and Mum, Katherine.

After six rounds of chemo, surgeons removed Ryder’s adrenal glands, where the cancer had originated. He woke up looking so thin and sickly with his shiny bald head.

When I took him home, I knew I couldn’t lie to him or Caden any longer.

That afternoon, I pulled them onto my lap and read them a picture book called Lucy Has a Tumour.

Afterwards, Ryder grinned.

“That’s what I’ve got!” he squealed. “I’m just like Lucy.”

I giggled for the first time in months. He was so brave.

Soon afterwards he had a transplant to replace the dead cells with healthy ones. It was an agonising process. Ryder started getting nightmares and I’d cuddle him close until he slept again. One morning his lip quivered as he told me about his dream.

“We found a mass in Ryder’s abdomen,” she explained. “We’ll need to look into it further to see if it’s cancerous.”

“The cords doctors put in me got ripped out,” he sobbed. “I was bleeding everywhere.”

Now Ryder is four and he’s started immunotherapy. He’s been declared cancer-free, but most neuroblastoma kids relapse within months. And when they relapse their chance of survival is five per cent.

I’m determined to make sure he lives. My baby can’t remember what life was like before he got sick and that isn’t fair. He deserves to be happy and live a normal, healthy life.

Our only option is a trial vaccine in New York for neuroblastoma patients. It’ll cost $300,000, but it would mean he has a chance of living beyond five. I don’t want him to die, just because I don’t have the money.

For the first time since he was diagnosed I’m filled with hope. Neuroblastoma is a horrible disease, but I won’t stop fighting for my boy.

*To help Katherine and Ryder, visit https://au.gofundme.com/rydersjourneyustrial

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