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.

You can keep up with the latest news by subscribing to our blog at the bottom of any page on the website.

The story of Maya Maguire begins
The story begins

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.

Baby Maya only a few days old
Baby Maya only a few days old

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 Maguire 11 months into treatment for cancer

Maya and Amelia when Maya was 11 months old

10 thoughts on “Everyone has a story

  1. Just loved reading this post, I am in awe of all you have done for your daughters and our community. Sending love and support always.

    From your special care nurse,

    Emma

    Liked by 1 person

    1. Oh Emma, thank you for everything you did for us from very early on. We were thrown into a world of chaos, made easier by doctors and by nurses like you, who helped us through. xx

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  2. You are an inspiration Tarsh! I dont know how parents get through something like this, but reading your letter gives an amazing insight into how life goes on, even when u have no idea how!!! Brave….honest….remarkable….admirable….keep up all the wonderful work u do. 😘

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    1. Thank you Kelli. People often remark that they ‘couldn’t do it’, referring to what we’ve been through, but of course they could. Anyone could and would do everything possible for their child. It’s just a matter of doing the very best you can each and every day, one day at a time. Thank you for taking the time to read about our story and for the love and support you and your family have provided us xx

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  3. I still remember Maya’s beautiful bubbly smile as she sat in her cot in hospital. You are a true inpiration to all who has had the pleasure to meet you. Love to you all.
    Kelly and Lexie.xx

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    1. Oh Kel, one good thing about all those nights in hospital was the beautiful & inspirational people we got to know. I remember how hard your little Lexie fought, I’m so glad she is doing well and provides hope to others fighting similar battles xx Love straight back at you xx

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  4. Dearest Tash, Mark and Amelia,
    You are so strong and brave. We can only stand in awe of everything you’ve done for the community in the wake of such a personal tragedy. Love to you all as you travel this journey. We will always support and help you with anything we can. xxxx

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    1. Thank you Jen xx We have met so many wonderful, supportive people like you, Dean and the kids. It would be a lonely and hard road without such support xx Thank you

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  5. To the wonderful Mark, Tash & Amelia,
    I remember reading this through when you posted years ago and I was inconsolable then. Having a little girl of my own now, I can’t begin to imagine what you all faced and reading this makes my heart rip in two for you all, all over again. You are all inspirational for all you’ve been through and all you do for families going through these horrible times. I love seeing Maya’s beautiful smile in my feed when I see your updates, it brightens my day to remember the one time we were privileged to meet her. Keep doing what you do, hope to see you all again sometime if you’re ever up north again xx

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    1. Hello beautiful, thank you for your lovely words. I understand completely the extra significance this must have now that you have your own beautiful little girl. I still cry every time I read my letter to Maya and I’ve read it a hundred times at least. While it’s terribly sad it also helps me remember her and the times I could hold her in my arms. I’d give anything to be able to do that again. I love your posts about #lifewithaminicooper – I can feel your love for your little girl through every photo. This is what’s most important in life, those special moments with loved ones that bring with them pure happiness. We can never take them for granted. Keep having fun Amanda and I can’t wait for the day we catch up in person again. Xx

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