With a new website for Maya’s Rest bringing with it a simple platform to write and share stories, we’d thought it only fitting that we start with our own story, well the beginning at least. Over time we will bring you more of our story, stories of those who support us and those who we support. We will share our future dreams of making Maya’s Rest accessible to families on a full time basis. There’s never a dull moment here at Maya’s Rest.
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Once upon a time…
December the 2nd, 2011 should of been the start of our fairy tale, one where I would give birth to our second child, we would take her home and all live happily ever after. But sometimes life just doesn’t play out the way we imagine. I did give birth to a beautiful little girl we named Maya. Younger sister to another beautiful little 2.5 year old girl Amelia. Looking back now it sure does feel like a fairy tale, just with a different story line to what we ever could have expected. As who in their right mind would write a fairy tale about a little girl born with cancer?
Ignorance is bliss
I often refer to how ignorant we were of the world in which we were propelled into soon after Maya was born. In a way I wish I was still ignorant, I wish I never found out first hand of the thousands of little children fighting hard just to stay alive. Of the families whose lives are torn apart while they try to give their sick kids every chance of survival. One parent spending weeks on end, often over many years in hospital, while the other tries to provide a semi normal life for their other children at home. It’s heartbreaking and truly unbelievable, until it happens to you.
Now don’t tune out thinking it’s all doom and gloom, there’s also stories of hope, inspiration, gratitude and wonder and I’d love nothing more than for you to join us and read about them all. There’s some really amazing people in our world, people that will restore your faith in humanity and I will share their stories with you too. And you just might find out how the fairy tale about a little girl born with cancer had an unconventional ‘happy ending’.
A mother’s heartfelt letter to her daughter
The first few months of Maya’s life was a complete blur, it’s hard to look back and remember how we even made it through each day. But like any situation, after a while it becomes easier and I guess ‘normalised’. Maya had chemo every week in Sydney, then a couple of days at home in Canberra before we headed back up the Hume Highway to Sydney Children’s Hospital in Randwick. It was a endless loop, life continuously on replay. We learned very quickly to value the time at home, together as a family. It was so precious. We also became very good at dropping everything to be in hospital within an hour of Maya spiking a temperature. Her little life depended on it as an infection could kill her. It was a crazy life that sadly so many people live. It was a period in time that changed our perspective on life and made us appreciate the simple things.
It was such an overwhelming time for us all. So much so that after a few months into Maya’s treatment I started to write her a letter about everything she was going through. A letter I hoped to read to her at her 21st birthday. It has a few chapters that I will share with you overtime. But for now I will leave you with the first chapter, one that shares the hopes and dreams we held so tight, the hopes and dreams that got us through each day.
Maya’s Journey – Through her mother’s eyes
Perfect pregnancy, ten days overdue, safe caesarean, baby number two.
Four kilos all pink and squished, another girl, just like we wished.
Quick cuddle, swaddled tight, whisked off into the night.
‘Little lump’, special care, big blue eyes, so aware.
Ambulance transfer, MRI, sedition mistake, I start to cry.
Transferred again, this time by plane, you’re two days old, this seems insane.
Doctors everywhere, ICU, lots of scans and tests to do.
Just a few days old they operate, four days for results, the longest wait.
The call comes; we are in shock, our baby born with cancer, mental block.
Life spins out of control, another Op, this time a Hickman’s double lumen in your chest they pop.
Chemo starts, you’re ten days old, forty two weeks to go, is what we’re told.
Rhabdomyosarcoma, alveolar they say, red lumen, white lumen, chemo, GCSF for ten days.
Injections by Daddy, you’re both so strong, for any parent this seems so wrong.
A 38 degree temp, something’s not right, hospital, antibiotics, middle of the night.
Haemoglobin low, fatigued and white, blood transfusion to make you right.
You are so accepting and happy, you’ve been through so much, how can this be?
Before touching you, we must be clean, washing our hands constantly in between.
No ground for you, just pram and bassinet, no normal baby activities just yet.
Actamycin, vincristine, cyclophosphamide, post hydration fluids pumping through your veins all night.
Bactrim three days a week and twice each day, to stop medical pneumonia is what they say.
Central line is blocked and tight, bleeding from your chest, almighty fright.
Another op, your right side now, you just bounce back, we wonder how.
Almost three months old, you’ve been through a lot, you’re losing weight, a tiny tot.
Five months go by; you’re doing well, no more infection stories for us to tell.
No more ops, but blood transfusions times three, your blood counts are low, but generally healthy.
You’re very clever, waving hello to all, standing up, clapping and having a ball.
We’ve hit week forty and life is easier now, when you were born I couldn’t have dreamt how.
We are getting there, one day at a time; our little angel will do just fine.”
Maya and Amelia when Maya was 11 months old