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Vivian’s Journey ❤️

  • About Vivian's diagnosis      26 May 2020
    Posted by: Trish Schedewy

    Vivian's diagnosis is a type of renal (kidney) cancer called a Clear Cell Sarcoma of the Kidney and her's is a Stage 2. It's extremely rare. Her oncologist told us that there had only been 3 other cases of it at Starship in the last 40 years. It's also known to be very aggressive. Even though all the scans and tests after surgery came back clear, there's still a high possibility there are cancer cells in other parts of her body that these tests and scans cannot pick up. Medical science is amazing but there are still gaps in what it can and cannot detect. So with that in mind, Vivian needs to undergo very intense chemo to kill any stray cells, and radiation therapy on the area where the tumor was to make sure there wasn't anything spreading in that area. A treatment plan her oncologist even ran by specialists in Vancouver!

    Now leading up to all this, Viv showed no obvious signs of being ill. Despite her small size, she had no problem keeping up with other kids her own age. All her development was perfect. For the last few months though, she'd occasionally complain of a sore stomach, usually around dinner time (when it was something she didn't want to eat) or around bedtime (because we thought she was trying to get out of doing what she was told).

    It wasn't until some time in early April when she came to me, saying she had a sore stomach. I asked her to point to where it hurt and I could straight away tell something wasn't right. Her whole tummy was bloated and there was a noticeable lump sticking out on her righthand side, just under her ribs. I took her to the doctor, who ordered for full bloods and an ultrasound. We had the bloods done the next day, all clear and normal. Again, nothing to indicate that anything was wrong so I didn't think too much about it, thought it might have been a reaction to something she'd eaten. A couple of weeks later, managed to get the ultrasound and from what I could see, even I knew something was definitely not right. A few more scans later, we had our diagnosis.

    Vivs cancer is not hereditary and Emmett's at no risk of developing it either, being her twin. It's purely just something that's happened in her body at some stage that no one could have predicted.

    I hope I've managed to answer a few questions and please ask if you'd like to know more. I'll do my best to answer 💖

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  • First Day of Chemo     13 May 2020
    Posted by: Trish Schedewy

    Hi everyone,

    Firstly I would just like to say, from the bottom of my heart, thank you for your kind generosity! I don't know what the future holds for Vivian and our family but because of you all, financial pressure won't be part of my stresses. I'm so grateful for that.

    Yesterday Vivi had her first chemo treatment. Most of the day went well until mid afternoon when she started to fatigue and her temp spiked to 40°. With some pamol and rest, her fever came down and she was a bit better in the evening.

    She has more chemo today and tomorrow then hopefully we're home on Friday.

    Again, thank you everyone for your support, love and prayers. I'll be forever grateful 💖

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  • Update #2      7 May 2020
    Posted by: Briar Pope

    Hi everyone,

    So today we met with the oncology team at Starship for Vivs results and treatment information.

    What was first thought, was that Viv had a Wilms Tumour. It's actually been diagnosed as a Clear Cell Sarcoma of the Kidney. This form of kidney cancer is even more rare than the Wilms Tumour. While the surgeons are confident they removed it all, Vivian needs to undergo 6 months of chemotherapy and have 6 radiation therapy treatments as well. The cure rate from this is about 80%

    From the intensity of her treatment, she'll get all the horrible side effects too. Because of this, we'll be continuing a little bit of the "lockdown life" that we've all been doing recently. Vivian's health is our number one priority and while we're missing all our friends & family, please understand if we can't have visitors or attend events.

    Everyone's love and support has been incredible thus far and we are beyond grateful for everything. I've lost count how many times I've been moved to tears by all the love and generosity. From the bottom of my heart, thank you to you all 💖

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  • Update #1      29 April 2020
    Posted by: Briar Pope

    Hi All,

    Just a quick update. Vivian and Mum ( Trish ) were able to go home today!!!

    They will be so much happier in their own space now. Also with the rest of the family, older sister Ruby and Vivian's twin brother Emmett.

    Trish is absolutely blown away by this page. She is speechless.

    Thank you all so much for your support for this amazing family!!!

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