While her 17-month-old son was fighting his battle with cancer, mum Alex was dealt another devastating blow. She was also diagnosed with cancer.
Here is her story, as told to Carrol Baker.
I was getting worried, it had been a few weeks, so took him to the emergency department. They did blood tests, and booked him in for surgery. Doctors thought it might be a non-cancerous tumour (a haemangioma), an ultrasound showed it was too vascular, that he’d bleed to death if they did the surgery.
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‘AT THE HOSPITAL, IT DIDN’T FEEL RIGHT’
I wasn’t being listened to. My questions weren’t being answered. They wouldn’t run more tests. They did nothing – that was gut wrenching. Four days later I left hospital with Mason. One doctor said, “You’re an overbearing mother,” another said, “You don’t know what you are talking about.”
My GP referred Mason to another hospital, the doctor in emergency right away said, “We’re going to run some tests, this has gone on for way too long.” It had been two months.
They did an MRI, CT scan, an ultrasound and took a biopsy – in a few hours, Mason was in recovery. The oncologist was standing beside the bed, Mason was still asleep. He told my husband Hugh and I that Mason probably had Langerhans cell histiocytosis (LCH), it’s similar to Neuroblastoma. Further tests confirmed it.
‘MASON WAS IMMEDIATELY STARTED ON CHEMOTHERAPY’
It’s such a rare cancer the oncologist said many doctors would never see it in their lifetime. Mason was also later put on a European trial for a new treatment, but it didn’t work – the tumours were spreading. So, they decided on an aggressive 24 hours a day treatment for one week of two types of chemo drugs.
He was violently ill, and had to have blood and platelet transfusions. I was starting to feel exhausted, with looking after Mason, and working as a nurse full time doing night shift.
Little did we know, our world was about to be turned upside down again.
One nurse at night shift handover, said my neck looked like it was getting bigger. She said, “It almost looks like you have a goiter.” One of our bosses used to regularly order in pizzas, I just thought I was putting on weight from eating it. Two months later, the same nurse said, “It’s getting bigger, you need to check it.”
‘I THOUGHT, “OK, I’LL HUMOUR HER”’
I needed a script anyway. My GP sent me for an ultrasound, it showed tumours, and I had biopsies done. I was diagnosed with stage four thyroid cancer. I had my thyroid, parathyroid, and all my lymph nodes removed, as everything was compromised. It was pushing against my oesophagus; I was told in six months I would have suffocated in my sleep.
The news was devastating, but I couldn’t stop to think about it, I was on autopilot, caring for my son and my family. Everyone tells me I’m strong, but I’m just trying to do my best, as a mum. There are others that are going through really hard times too. Just last week, a friend from hospital had to bury her one-year-old. Some parents don’t get to take their children home from hospital, I’m grateful I could.
I’ve had some chemotherapy – I couldn’t have radiation as I would have been radioactive and wouldn’t have been allowed near Mason. I have constant blood tests and take medications and hormones.
My cancer diagnosis was a couple of days before we found out Mason’s cancer was spreading. The tumours in his brain, have spread down his spine into his pelvis, and down his right arm and leg. We don’t know if it has gone to other major organs yet.
If it has, doctors have said there’s nothing more they can do.
‘MY DAD ALSO HAS CANCER, HE IS IN ICU’
Four months ago, he was diagnosed with non-Hodgkin’s lymphoma, my family are now living at my mum’s little place. The love and support from family and friends, and even complete strangers, has been amazing.
I can’t work now, we’ve struggled financially, sometimes I worry how we will keep a roof over our heads, food in our bellies, and get our medications which are a costly expense each month. Mason’s never gone without his medications, but at times I go a month or two without mine, as a mum you put your kids first.
Mason knows he’s sick, he keeps telling us, “Doctor Tim will make me better.” On the really, really hard days Mason’s smile gets me through, he’s just turned three, he’s taught me resilience and patience; he’s taught me to enjoy every moment because none of us knows what is around the corner.
If you’d like to support Alex and Mason, you can do so via their Go Fund Me page.
This article originally appeared on Kidspot and was reproduced here with permission