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Barnaby's Cancer Journey Continues

  • No evidence of disease

      27 June 2022
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    And just like that, we can breathe a tiny bit more.

    Barnaby had his first official MRI scan out of treatment last week. And today we had the greatest news confirmed, no evidence of disease.

    He had his last round of Chemo just after Christmas and we finished radiation 9 weeks ago. We made a decision recently to not use any further Chemo, those closest to us may know that maintenance Chemo was something we pushed hard for initially, but in reality the evidence isn't there that it would do any more 'good' which actually means the toxicity of it could potentially only do harm, potentially a lot of harm. We have started a different journey, and we have faith that Barnaby sits in the best prognostic category to continue to beat this, so we are focussing on healing his body. The treatment he has had to have to get this far... It is a lot.

    This kid is incredible, the kind of incredible that takes my breath away. He loves his nurses, he loves his people, he just loves loving. And that brilliant and beautiful nature just sums him up. Cancer can f right off because even in some of the darkest days, it never took your spirit Boog.

    Barnaby we are endlessly proud of you.

    I have learnt a lot about Cancer through our journey, one thing that sticks with me currently is that when it is invisible and you don't know its there, or you can't tell someone is fighting a battle, then you just don't know. Remember that, remember that you don't always know the pain some people are living with on the inside. Barnaby's hair has regrown and he doesn't have a central line... The obvious signs are fading but his story remains. And it is a big one.

    Our journey doesn't end here, Cancer will be a part of our lives but it won't ever take us over. And while we kick it to the curb today, we have many scans ahead over the next 5 years to make sure it stays down.

    My heart goes out to all of you fighting this battle for you, or for your loved ones.

    We will be right here attempting to make some sense of wtf just happened this last year and most importantly, loving every day along with Barnaby and Ziggy 💚

    And on that note we will take down this page and we sincerely hope to never need Give a Little again. But to those of you who have helped us, please know that your support has helped us through immensely stressful times. And that is so important.

    Xx

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  • Radiation tick

      16 April 2022

    I want to start again by thanking all of you for your endless love and support. Today is a huge milestone for us, and Barnaby especially! This absolute superstar finished the radiation portion of his treatment this morning and rang the bell to show how hard he has worked these last 6 weeks. This feels like such a huge win! We are so proud of you Barnaby, you amazing wee dude ❤️

    We are heading home to NZ next week and we are all beyond thrilled to be back on home turf soon. But the reminder prevails that the journey isn't over as we set up our first appointments back on the ward in Christchurch. Regardless, nothing could diminish how good it is to tick radiation off of Barnaby's plate - you have done it wee man, and we will all keep pushing forward with you 💙

    Love ya Boogie xx

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  • Week 3 coming in fast

      21 March 2022
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    Just a wee update to let all of you wonderful people know how we are getting on.

    Barnaby starts week 3 of radiation tomorrow, this feels like an odd milestone to celebrate, but it puts us at the halfway mark very soon! It also leaves us a little worried as we have been told that the cumulative effects of a daily GA and radiation itself are likely to start to take their toll this week. He has been doing so well up until this point, though definitely on the moody side and understandably so, so we are hoping to get a few fun kids activities in this week to boost his spirits and also to make sure we do some fun things sooner, incase he feels off later in treatment. A wonderful charity here has given us tickets to the Zoo for Wednesday 😊 your wonderful donations also mean that we can take the boys to the aquarium as well, which is just brilliant so that we can ensure we keep these two, Barnaby in particular, as happy as possible. Keeping him happy during treatment undoubtedly has a flow on effect in terms of positive outcomes 💚

    Thankyou all so much for your incredibly generous donations, it is taking a huge amount of stress off of our shoulders financially at the moment, your beautiful heartfelt prayers and healing thoughts. We appreciate every single one of you.

    💜 Zoe, Mike, Barnaby & Ziggy

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  • We start tomorrow!

      7 March 2022
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    We want to start by saying a huge thankyou to everyone who has been so generous, both in donations, and even more importantly - in loving prayers and healing thoughts, positive energy and happy/fun/ray of light vibes that get sent Barnaby's way. It is beyond hugely appreciated and while we don't always have the time or mental energy to message you all at the moment.... You are seen, heard, and felt so lovingly by our wee family.

    It is a funny mix of emotions around here. Barnaby starts his first round of Proton radiation tomorrow. I think we are all just a little wary of the unknown, while feeling incredibly grateful that we are getting him the best treatment possible, it still feels a bit surreal. It has been just over a week since he had his planning MRI and CT scans done, and they needed that time (and usually more time) to map everything out. But as it was the final hour when we got approved to come to the US, the centre here has been phenomenal with organising everything promptly. The nurses and Drs have been incredibly welcoming, and so generous with the kids. There is a lovely charity that organises a treasure chest of toys and every Friday the patients and their siblings get to pick a toy. Something like that is so incredibly helpful in terms of lifting the spirit of a little kid going through a hell of a lot. You will do anything in your power to make them smile ❤️

    The kids are both enjoying their time in Atlanta, we have both been very cautious of Covid but are trying to not let it rule us, so we are cautiously still going for walks and finding some parks the kids can play at.

    Anything for our babies and especially anything in our power to get Barnaby through and hopefully smiling. That's where you will find us ❤️

    As always, we love you Boogie 💜

    Zoe, Mike, Zig and Barnaby xx

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  • US bound!

      19 February 2022
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    After some absolutely chaotic planning, we are heading to the US on Monday afternoon, we are sticking together as a family and all heading over to support Barnaby as a unit of 4 ❤️

    We have had a hard week trying to organise travel, initially being told that the kids had to self isolate for 7 days, we worked hard to get to the US by Thursday last week. Unfortunately our wee dude Barnaby spiked a 40 deg fever on Weds night and if we fast forward to Saturday night, he is still in hospital getting through a fungal blood infection. He has had his Hickman line removed and is getting a new arm port placed first thing Monday morning. Mike and I are pushing everything we can to get in the air on Monday afternoon and we have been told Barnaby should be cleared to fly!

    Wish us luck!

    We have been so stressed about trying to dodge Covid in travel and now that this has all happened at the last hour, we are feeling VERY hopeful for smooth 'sailing' 🤞🤞🤞

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