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My new hero – The journey has started…

27/01/201388 Comments

I have a new hero, he is awesome; just ask him, he’ll tell you!

As my previous post told, on the 3rd of January our son Alex was diagnosed with a brain tumour which required immediate neurosurgery to remove. What followed the diagnosis can only be described as the worst 2 weeks of my life to date. An emotional roller coaster ride that no parent should ever have to endure and there’s nothing anyone could ever say to you or do to prepare you for.

Since that post, the dust has certainly settled which has allowed us to collect our thoughts and do some (although the situation doesn’t allow much) planning for the near future. The tumour was cancerous and this sadly means that we have started what is referred to as “The Journey” through Chemotherapy. For anyone who’s super keen, the drugs are:

  • Vincristine
  • Etoposide
  • Cyclophosphamide
  • Cisplatin

As word of this spread through our friends, family, colleagues and even general aquantances through business or personal dealings, offers of assistance kept rolling in. For this I’d like to say thank you to anyone and everyone who’s made offers to us, we truly appreciate the love and support, it’s allowing us extra time to focus on the kids right now which is very important. If we haven’t responded or taken you up on your offers, don’t worry…
We’ll get to you!

We’ve had contact from a number of community based organisations who offer support to families in our situation including

  • Novita
  • Can do for Kids
  • Vision SA
  • Camp Quality and
  • Little Heroes Foundation (fund raising details to follow this week)

Each who offer their own unique support: either with support around the home, making it safer for Alex with his current lack of vision, technology assistance, general support to the family or “anything” else in this support banner. I’m truly astounded as to the amount of community based support out there, it’s amazing and I simply can’t say enough good things about the staff of the organisations mentioned as well as the staff at the Women’s and Children’s Hospital as to the care that has been given to Alex and myself while in hospital.

Something I really do want to say on a personal note is that my employers have been amazing through this whole ordeal. The abridged version of my conversation with them was “You look after your family, we’ll worry about leave and pay later”. I don’t know what else to say other than a huge and public thank you to the directors for being such fantastic bosses and outstanding men to allow me that freedom to worry about my family first.

Despite all of the things that have occurred over the last couple of weeks, Alex has continued to take everything in his stride. His vision was cut off by the pressure of the tumour, which is yet to return. He is (not badly as yet) nauseated by the drugs that he’s getting on a daily basis at the moment yet continued to ask for the foods he loves. Despite the intermittent nausea and lack of vision, he continues to play with toys, chat to anyone and EVERYONE that enters the area he’s in, he’s happy, playful and continues to entertain us on a daily basis.

The little fella truly is awesome and as I said:
My new little hero goes by the name Alex!

2012-12-16 13.26.45

88 Comments

  1. The Nerd Mama
    27/01/2013,

    It’s amazing just how much kids can go through, and not complain. You’re all amazing, and we continue to think about you all. Let Me know if Alex wants a special hat knitted up. 🙂

  2. Angela Alcorn
    27/01/2013,

    He’s a trooper. I’m glad your work situation is sorted out too. That’s one less headache to think about.

    We’re wishing you all the best from here.

    On a slightly more random food-related note, often chemo drugs make it difficult to taste food well. You might find that he appreciates things with more flavour (like curries) as time goes on.

  3. James Galyon
    28/01/2013,

    I will be keeping you and your family in my prayers. When you figure out what you need, I will get the word out to my hundreds of friends in tf2. James a.k.a. [toj,cc] Bird Of PrAy

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