Maya’s Story – When Childhood Begins with Cancer

The blog I’m sharing is a story close to home.  Like many of you my family has been affected by cancer.  Sadly it is a reality of today’s existence and despite all the progress we’ve made with early detection of cancer and treatment, thousands of people die every year in Australia. But no one could have ever guessed that a child could be born with cancer. An innocent that child that was yet to breathe their first breath. How can that happen? Why my niece? Here is my sister in laws story.

Maya’s Journey  (Through her mothers eyes)

Perfect pregnancy, 10 days overdue, safe caesarean, baby number two. 4kgs 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 2 days old, this seems insane. Doctors everywhere, ICU, lots of scans and tests to do. 10 days old they operate, 4 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 hickmans double luman in your chest they pop. Chemo starts, you’re three weeks old, 42 weeks to go, is what we’re told.

Rhabdomyosarcoma, alveolar they say, red luman, white luman, chemo, GCSF for 10 days. Injections by Daddy, you’re both so strong, for any parent this seems so wrong. 38degrees some thing’s not right, hospital, antibiotics, middle of the night. Heamaglobin low, fatigued and white, Blood transfusion to make you right. You are so accepting and so 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, cyclophosphamite, post hydration fluids pumping through your line all night. Bactrim 3 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 3 months old, you’ve been through a lot, you’re loosing weight, a tiny tot. 5 months go by, you’re doing well, no more infection stories for us to tell. No more ops, but blood transfusions times three, your counts a low, but generally healthy. You’re very clever, waving hello to all, standing up, clapping and having a ball. We’ve hit week 40 and life is easier now, when you were born, I couldn’t of dreamt how. We are getting there, one day at a time, our little angel will do just fine.

(written about 3 months later)

Last time I wrote forty weeks of chemo had past, two weeks to go, of which we hoped was the last. Evaluation scan done and the results are all good, we celebrate like any family should. Our celebrations are short as that night when I get you ready for bed, I find a small lump below the right side of your head. Sleepless night and then into Canberra hospital we went, doctors think its a tumor so off to Sydney we are sent. An MRI to confirm, but not one there is two, cancerous tumors are back, why is this happening to you? Another operation but they can remove only one, the other is too dangerous, too much damage could be done. Your Grandma, aunts and uncles come to be close to you, mummy’s good friends from Darwin and your cousins too. Specialists are worried, your prognosis not good, we are given some options that parents never should. We were given a choice that we will never speak about, we took it all in, tears but no urge to shout. Radiation is harsh, lots if things could go wrong, just to get through it you would need to be strong. In the time between your operation and radiation is to start, another tumor appears, enough to break any ones heart. Your going down hill, the pain is quite bad, the biggest race against time that you’ve ever had. Radiation begins, its like instant relief, the pain seems to subside, its working is what we have to believe. Two sessions down and your doing great, lets hope its the same for the next twenty eight. A general anaesthetic each day, a mask covering your face, they put you to sleep while still in my embrace. It’s hard to hold you close and see you drift away, it will get easier with time is all that they say. Morning is radiation sessions, afternoon family fun, making the most of each day, so you can tell cancer who won. Six weeks of treatment, we all stayed together, we called Ronnie Macs home through all types of weather. There was sunny days of smiles and rainy days full of tears, dreams of the future and bleak days full of fear. We took respite at Bear Cottage, not too sure at first, they offer palliative care so we just thought the worst. But it was amazing, we could relax and rest, spend quality time as a family, do whatever we liked best. We took walks to the Corso and played in the sun, our meals all provided, no stress for anyone.

You turned one during treatment, we had two parties with friends, some travelled so far but that’s not where it ends. They bought bracelets so gorgeous on each of them is your name, they don’t even know each other but their gifts are the same. You wear them together, both on the same wrist. You love them so much, through your fingers they twist. Treatment winds up its Christmas in just a few days, the lights shining again we can see through the haze. Just after Christmas you started a new intensive protocol, for a moment cancer was winning, but you settled the score. You had another scan to see what the tumors have done, the scans are all clear, so this time you’ve won. Last innings has started, but this ones for show, as who will come out on top, we already know.

( Written 6 months later)

To my dearest Maya, This is the last chapter I’ve been longing to write, the one that wraps up your incredible fight. Over the last 6 months you have endured so much pain, stem cell harvesting, intensive Chemo then stem cells infused once again. Three days of VETOPEC each round, the drugs very toxic, only a few days at home every three weeks, as it made you so sick. Countless transfusions, platelets and blood, too many scary episodes, each an emotional flood. You lost your eyelashes, eyebrows and all of your hair, but amazingly your appetite was definitely there! You also never lost your smile, that cheeky little grin, the one that innocently drew everyone in. You missed your daddy and sister when we were away, so much time apart, but we spoke everyday. You fought so hard to be happy and never give in, like you knew all along you were going to win. We made so many great friends during our long hospital stays, we all supported each other as nights turned to days. So many children are fighting this horrible war, so many heartbreaking journeys behind the cancer ward doors. We are just so grateful for the battle you’ve won, but so much grief is felt for the angels this disease overcome. To make the most of our days is our pledge to you, to give you a life full of happiness and endless love too. To play and laugh, to run and to fall, to bathe and swim, you can now do it all. Thank you my princess for inspiration each day, you’ve changed our lives forever in the most positive way. But now its your turn to be a kid and have endless fun, as you cancer journey is over, well done baby you’ve won!

(latest update September 2013)

Maya has recently relapsed and it’s a very difficult time for us right now. Our journey continues and we hope for a miracle.

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Warming Beautiful Souls created in honour of all children diagnosed with cancer. The warriors who are currently fighting, the survivors whose lives are forever changed and the brave little angels that have lost their battle.

Maya’s mum is asking people to knit, sew or crochet slippers, socks, beanies, hats, superman/supergirl capes, cardigans, throw rugs and any other comfort items for children of all ages, including babies, which will then be distributed directly to children during one of their many admission’s to hospital.

Our main goal is to bring a bit of happiness to children battling cancer, while evoking awareness of childhood cancer, which in turn will promote funding for research into cures for the many different kinds of childhood cancers. We also hope to promote awareness of the charities and foundations that provide support to families who have a child who has been diagnosed with cancer, through reviews, stories and photos on our page.

If you can knit or crochet please consider making something that will put a smile on a child with cancer’s face, for them to take with them during their treatment to make them feel more comfortable.

Buy your mum, dad, sister, brother, daughter, son, uncle, aunt, grandparent, neighbour, friend a ball or two of wool/yarn and ask them to help. Host a knitting ‘night in’ with your friends! Or better yet knit/crochet in public and when people ask what you’re doing tell them you’re making a child with cancer’s day a little brighter!

If you are part of a knitting club or another hobby group, maybe you could consider knitting for Warming Beautiful Souls for a week or two..? From the simplest of designs to cute fun designs, everything received will be greatly appreciated.

Items can be sent to:
Warming Beautiful Souls
C/O Natasha Maguire
Parcel Locker 10016 85369
54 Vicars Street
Mitchell ACT 2911
AUSTRALIA

Please include your first name and suburb/town as items may be photographed and displayed on our page. Please advise if you would like your details withheld.

Thank you.

Appy Kids for the Holidays

School holidays can be definitely a time when boredom sets in and often the devices that parents own (end up being in the kids hands)!  Below is a table listing apps and their suitability, age bracket, price and platform. I have selected these apps based on their educational use and what I have reviewed for using in the classroom (as an educator myself). Both my children love mobile devices, yet can use them in two very different ways.

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When looking for apps for kids to use, keep in mind that there are two types of apps. One category is purely content and the other is creative/tool based. Game based apps such as ‘Cut the Rope HD’ is teaching them about physics and this app is purely content. However ‘Creative Book Builder’ is a creative app and fantastic for keeping a journal for holidays/travelling overseas and then being able to share with friends and family.

There are various ‘app directories’ for both iOS and Android that will help guide you in choice of apps for your device. I also like supporting apps that are made by parents or teachers because of the educational value (and the content within them). Tech Coach HQ also specialises in teaching parents how to keep your children safe when playing on the device (both Android and iOS).

Top five tips for looking for apps:
1. Look at reviews of an app (just don’t buy it because your child wants it!)
2. Look at in-app purchases, is it really free or is there a hidden catch?
3. If you are concerned about buying apps, buy iTunes cards (for iOS devices) as a means of budgeting what you purchase for the device.
4. Go to http://appolicious.com/ for the app directories, and see what is recommended.
5. Finally, limit screen time. This app is perfect for this (Screen Time – Media Manager) and for Android (Screen Timer).
Don’t forget there are parental controls that you can implement on the device and you can restrict iTunes purchases (this is very important when a particular app is free, but there are in-app purchases and parents have been caught out).
For Further information about apps for your mobile device and other ‘techie things contact Megan Iemma at megan@techcoachhq.com.au or http://www.techcoachhq.com.au

2Megan’s Bio: Technology Coach and “IT” girl Megan Iemma is a thought leader in the world of technology and its uses. An educator and technogeek, Megan combined her passions for education and technology and founded Tech Coach HQ working with businesses and their teams to improve processes and embrace the productivity technology has to offer.