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Help for the Jenkinson's - Hamish's Journey

  • HAMISH'S personal update!! 😁

      24 January 2023
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    How good...finally last week, getting out and about with the family, enjoying some of the summer ❤️❤️

    Update..

    Now ticked off the 6 week check ✅

    Best news of a super shitty, stressful year = pathology came back, they’ve tested and tested and tested a bit more, and we are incredibly relieved that no further treatment is needed 💪

    Extremely lucky to have dodged the biggest bullet (all 3.5kg of it 🫣) ever.

    We have photos of the surgery and tumour,so DM Hamish if your interested and not to squeamish 🫣🤢

    Will be kept a close eye on from here on in, another scan in 6 months and then yearly from there. Pain meds are the new daily routine, with nerve (and cut) pain management top priority, to manage ongoing chronic pain and allow daily functioning plus sleep.

    Rehab is where it’s at now - trying to build up the muscles that have been cut right through. If you know your anatomy you will appreciate that there are a lot of muscles to fix 🫣

    Lots of ideas on how to do that, working with hospital physio, looking at pools/hydrotherapy, getting work fit is the big goal. ‘Normal’ won’t be for at least another year.

    Thank you to everyone who has shown us such amazing support , we feel so much gratitude 🙏 We’ve had people from all over the world 🌎 message, phone and txt during this time to share their love, support and words of wisdom. It makes you appreciate the friendships that you have made over the years ❤️ True friends are there when you most need them 💪🏻

    This incredibly stressful and at times surreal journey, has brought a new perspective on who and what is truly important to us. After almost clocking out a couple of times during surgery and scaring the life out of Sarah, it makes you appreciate the little things in life more.

    Life is short - don’t take what you have for granted ❤️ Enjoy the little moments ❤️

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  • Hamish is Home Everyone!! 🏡

      9 December 2022
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    update from Sarah

    Home ❤️🏠❤️

    The best birthday present I could have asked for!

    You don’t need to be a medical professional to see the difference between the very first X-ray (top) that picked up Hamish’s tumour back in August, and then the one under, around a week post op. Bloody scary I can tell you to see that for the first time 😱

    By the time Hamish got to surgery, it had grown again and his right lung was completely sandwiched and non functional, and his heart had shifted and was severely compressed, more than what anyone had realised. He was lucky not to have had a cardiac event or stroke, and the specialists were blown away that he had been functioning as well as what he had.

    We had the best of the best surgical team in Wellington, they are miracle workers and deserve every dollar they earn and more.

    Pain management and rehab is the current focus..he can breathe again though, and no longer has pressure on his heart so we see it as winning.

    💪❤️

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  • Escape from Wellington....

      5 December 2022
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    See ya Wellington!

    Transferred back to Hastings Hospital late this arvo 👏

    Hopefully just a few nights while he’s assessed, seen by all the various teams, and pain meds sorted then Hamish can get back home, start the recovery in his own environment 🙏

    It’s a good feeling to be back, closer to getting home ❤️❤️

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  • Progress Team!!!

      4 December 2022
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    Progress…out of bed, went for a (very slow 😅) stroll to see the sights of the hallway and sat in a chair for a bit 🙌

    Lost the second chest drain, drips are being weaned and plan in place to start moving towards oral meds.

    Getting closer to getting home 🥹❤️

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  • Slow road to coming home 🏡 update from Sarah

      1 December 2022
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    Last few days have been pretty rough but staying focused on the small wins , doing a lot better than where we were at a day or two ago, so will take that! 👍

    Still in the high dependency unit but now upgraded to his own room with even a window no less! Back on a few drips and morphine pump, we’d initially hoped we’d be back home today. Unfortunately it’s looking to be a few more days yet, surgeon just been round and is hoping early next week 🤞the mind is willing but body not so much 😵‍💫

    Missing the kids so much, and can’t wait to be back with them..for those that spot them around at school, kindy, dance, please give them some extra big smiles, if you can send some loving vibes to them…we know they’re really happy and well cared for back in the Bay, but it’s a rough time for them too, not having Mum and Dad there ❤️❤️

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  • UPDATE...

      28 November 2022
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    Now in the step down unit, so heading in the right direction ❤️

    Has had a few ups and plenty of downs, battling extremely low blood pressure at the mo which is causing a few issues.

    Overall stable and doing pretty well ,considering the scale of the surgery! While he’s still hooked up to a lot of drips, drains and monitors, he’s also lost a couple of the many tubes which is great. Being kept on the epidural catheter for the max period along with a cocktail of other good things so currently actually has very little pain , though that won’t be the case soon 🥺

    Thank you for all the positive comments, the words of support and messages. I’ve shown Hamish, it’s been really awesome for him to see ❤️❤️

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  • Post Op update from Sarah!!

      25 November 2022
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    Surgery complete ✅

    A massive day yesterday, tumour has been successfully evicted, along with some lymph nodes, a bit of lung and part of a rib. Lost 3L of blood in theatre , has had a blood transfusion, and is being pumped full of all sorts of goodies to get blood volume and haemoglobin levels to where they are meant to be.

    A big sucker weighing in at around 3.5kg , and about the size of a volleyball 😱 , his right lung had been literally crunched to nothing, and heart was under enormous strain.

    Had an initial scary wobble with his heart rate shooting to 200 and blood pressure plummeting, but now is stable in ICU.

    He’ll be here for at least another day while his blood pressure stabilises, it’s very low at the moment. We are hoping he might be able to move from there to a step down unit in another day or so once this happens.

    On very strong pain meds, with a epidural catheter covering from top of chest to groin, along with a cocktail of other meds, morphine pump etc, and tubes sticking out everywhere..however he’s chipper and talking, and doing pretty well all considering!

    Long road ahead, pathology will be 3-4 weeks away still before we know the full story and official diagnosis. He’ll have a pretty impressive scar that’s for sure, it’s a damn big wound 🥺

    The full surgical team and all of the ICU and supporting staff have been nothing short of amazing, we are so incredibly grateful to be in their care ❤️❤️

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  • Ready to get this show on the road!!!

      22 November 2022
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    Send love and good vibes people, Hamish is in Wellington - stage 1 of surgery tomorrow.

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  • We have a surgery date team!!... update from Sarah

      17 November 2022
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    It’s happening! The call we’ve been waiting for - now locked and loaded for next week…Wellington, here we go 😱

    We’re leaving Hawke’s Bay on Monday and Hamish is being admitted to hospital on Tuesday morning. First up is a blood supply embolization on Wednesday morning, then he’ll be monitored and the op will be on Thursday morning. A full day procedure from 8-3, he’ll then be in ICU to begin with before being moved to a step down unit. Then around 7-10 days in hospital depending on how recovery goes.

    Not sure if ‘looking forward to’ is the right expression 😅…but as there’s no other option, we just want to get on with it!

    Being away from the kids for a few weeks is going to be tough 🥺 We are so grateful to have amazing family, friends and an incredible school Te Mata School and kindy Te Mata Kindergarten Havelock North. We absolutely know, without any doubt, that they will be watched out for and will be surrounded by care and love while we are not here 🥹

    Again, we can’t express enough how much we appreciate all of the love, best wishes, prayers and support ❤️

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  • An update from Sarah

      29 October 2022

    It’s been very humbling and appreciative to receive so much love and support from everyone over the last few weeks.

    A huge thanks also to everyone who has generously shown support and donated to the give a little page that our lovely friend Kris has set up.

    Thank you also to everyone who has sent us messages, and checked in with Hamish, the kids and I. It really means a lot to us, and we’re so grateful and appreciative beyond any words we can say🥹❤️

    A (kind of) update:

    Yesterday we spoke to the surgeon - the cardio-thoracic surgical team in Wellington are busy still pulling together a plan based on all their findings so far , and working with the neurosurgeon and sarcoma team to decide on the best combined approach. Surgery should happen within the next few weeks, we hope to find out end of next week. Any further treatment will be decided once pathology is completed after surgery and a diagnosis is clear.

    The surgery is major, (we won’t bore you with the gory details - though Hamish being Hamish, did ask if it could be photographed and/or videoed 🥺) , there’s a lot of unknowns, and there’s a long, long road to travel yet and a massive rehab.

    It still all feels surreal and really is emotionally, mentally and financially draining. Hamish is starting to realise the enormity of it all, whilst still trying to remain positive and carry on with life. So a coffee delivery or visit and chat would be appreciated during his rehab after the surgery to keep him going 😬

    It’s bloody scary tbh - but we’re doing our best to take just one day at a time, and keep remaining positive ❤️❤️

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