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Support for Will on his Cancer Journey

  • Difficult choices and a solid thank you to all

      22 November 2024
    Posted by: Will Hamilton

    PLEASE SHARE PUBLICLY

    It’s taken a while to process the news and again this week another bunch of information and advice to digest. Confirmed relapse!

    My appointment yesterday with my Specialist made it abundantly clear. There is two options; move to Aussie and start your life again there to have the funded drug Daratumamab for your best chance of survival or pay for private care here in New Zealand and self fund the drug. Including specialist fees, clinical fees and the drug itself, I am told by my specialist team this is around $175,000. A very real and recent figure that a person recently in my situation has paid.

    Every day it frustrates me, frustrates my family, frustrates those who I share my story with, that in what we consider a developed country, we have to battle and suffer the consequences of bureaucracy, that is within a government department (Pharmac). Pharmac clearly lost its sense of strategic direction and mandate. Daratumumab has been in application and under consideration by Pharmac since 2017. Fast forward nearly 8 years and still no resolution.

    Every time Pharmac is questioned on the matter, their moral obligation is fulfilled behind the guise of their media team. The same answer, the same tag line, same commercial strategy statement, just a different date at the top.

    We believe it is time to expect some accountability and expect answers, real answers from real people. Most of all, we all expect results.

    Less Hui more Doey!

    Love from our fam

      1 comment  |  Login to leave a comment

    • 24/11/2024 by Greg

      Words fail me, mate 😢😢. And you know that's unusual!

      I've spread the word.

      Love and best wishes.

  • The other R word

      5 November 2024

    It is with a heavy heart that I share the news that Will has had a relapse 😥💔

    Managing this will require more intense treatments and significantly higher costs.

    Therefore, I’m keeping this page open longer and raising the donation goal to help support Will and his family during this challenging time.

    Thanks again to everyone who has given generously 🙏💛

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  • One Year!

      5 April 2024
    Posted by: Will Hamilton
    Main image

    On this day last year I was getting a serious dose of chemo. A one hit wonder, 30 minutes long. The weeks in an isolation suite and months of pain following are the hardest of my life.

    Today, I am back at work, full time, 3 months to the day post chemo I got back into uniform, two hours after a fitness test slog. I couldn’t have done it without the support of my family and all you generous donors.

    Thank you again. We hope the remission will last a good while, what we do know is a relapse is a reality. What is unused of the funds donated will be used to fund drugs that are again not funded and I can tell you the price tag is eye watering!! We have kept every dollar donated aside to fund those drugs.

    Thank you again, love your family and friends because you never know what is around the corner.

    Will, Amber, Jack and Harry

      2 comments  |  Login to leave a comment

    • 06/04/2024 by Greg

      Great news, Will. So good to know normality has returned to your life. You are blessed with a wonderful family, the boys a credit to you both. Good luck for the journey ahead, and if you need any help, or just anything, you know where to call.

    • 07/04/2024 by Brendan

      What fantastic news Will and family, what a awesome family you have, stay strong together.May your road only go well from here.

      God Bless Brendan Dunn.

  • The R word

      21 January 2024
    Posted by: Will Hamilton
    Main image

    Hi all, hope you’re doing amazing. What a summer it’s been so far huh!

    I spoke to my Haemotologist earlier this month and she’s said I can use the word remission! It’s taken a few weeks to get my head around and be confident using it. We know it won’t stay that way but as Amber said, we take the wins where we can.

    In other news out little Harry is just over 5 months old and a little character, pic for cuteness factor.

    Thank you all again for your amazing generosity. Our boys still have their dad around thanks to everyone helping us.

    Let’s hope Pharmac introduce some more funding for the drugs I will need in the future.

    Will, Amber, Jack and Harry

      2 comments  |  Login to leave a comment

    • 22/01/2024 by Kiwi Outreach

      Great news, Will! I wish you all the best for the future ahead.

    • 22/01/2024 by Jeanette Waters

      Will and Amber that is great news, you have handled this huge setback in your lives so bravely. We will keep the pressure on Pharmac for you and others needing these drugs. Enjoy those two gorgeous boys.

  • Time for an update

      22 August 2023
    Posted by: Will Hamilton
    Main image

    Hi wonderful supporters. It has been a while since I've given an update on where things are at, a little (okay maybe a lot) of change has gone on in the last few months.

    On the 3rd of July I got the sign off from my Haematologist to attempt my fitness test for work. Of course getting to that point was not east. When I got our of hospital in April after my Stem Cell Transplant, I could only run few hundred metres and do 5 press-ups, that was a big problem in itself. Over the coming weeks from there I pushed and pushed and eventually got to around a 4km two or three times a week and I walked the big hill in Queenstown; bottom of the Gondola to the top and down again. This I think was enough to convince my Haem that I was in good enough shape to do the test and return to work. Two days after being signed off I went and did the test and had a good 20 seconds to spare. The next day I jumped back in uniform. Finally some normality!!

    Some of you may have seen an article in the paper last week about drug funding and Pharma. These drugs are so so important to me and at a consumer cost of around $220k a year it is important that we lobby for these drugs as much as we can. Thank you to Stuff for helping me get my voice heard. https://www.waikatotimes.co.nz/a/nz-news/350049524/father-two-whos-spent-his-life-serving-public-told-consider-australia-funded

    In other news, Harry our latest addition has arrived in the world - photo attached :)

    Thank you all as always and take care

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  • What if it doesn't work!?

      28 May 2023
    Posted by: Will Hamilton

    That is the reality we are facing now, we have had a good week to digest it.

    A week ago we learn't that the chemo blast I went for did not work, seemingly did not even touch the sides. How you say? Well I am just one of the 34% of people that it doesn't work for.

    For me, I am struggling to see how, I was that sick and hit rock bottom that hard health wise that I am wondering how this ridiculously high dose of chemo didn't work. I can't sit there and wonder though, that doesn't change things.

    From here we are back to what we know works for me, Lenalidomide, Velcade and a huge dose of steroids once a week. hopefully that will get it to a point where the Lenalidomide can maintain things....we hope.

    I am back to running, I managed to get to 2 kms pushing a pram with Jack yesterday, and still not quite normal blood counts. My specialist was not exactly over the moon that I was back running; but hey, if you don't push yourself how are you meant to improve. Plus I have a fitness test I need to pass soon ha!

    I will keep you all updated as we go. What else changes things is all of your generous donations that will allow us to access other treatments not funded or available here in NZ.

    Again thank you all for your generosity. You are all amazing

    Will, Amber and Jack

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    • 29/05/2023 by Raewyn

      Hi Will

      Thank you for your update. I have been wondering how you are. Thinking of you and your family, best wishes for everything. It must be so incredibly hard on you all, take special care of yourself and trust that whoever is up there or out there (the universe, the Lord, angels, passed relatives and friends) are right there by your side looking after you. You've got this 👍

  • Toxic times - but for the best

      21 April 2023
    Posted by: Will Hamilton
    Main image

    Earlier this month I went for a long stay in hospital to receive high dose chemotherapy and stem cell return. To be honest, this is probably the hardest thing I have ever done in my life. There were times where I thought I wasn't ever going to get out of bed. I was in a positive pressure room that had it's own filtered environment, filtering out any germs to protect me since the chemo absolutely obliterates your immune system to zero.

    The day following the high dose treatment, I received 1/3 of my previously harvested stem cell back, this is otherwise known as day zero. My blood counts as expected continued to drop and drop until essentially my bone marrow was no longer functioning anymore. When you are in this position this is a really really scary thought. When you think about it your bone marrow is responsible for making blood, before it makes blood cells it makes baby cells which turn into many different kinds of cells like white blood cells that make up your immune system. Without a functioning bone marrow you cannot exist.

    Bloods were taken every morning at around 4am along with any medication needed. By around day +9 my bone marrow showed signs of life once again and it seemed those tiny little stem cells found their way there and started doing their thing. Being honest, I cried, it was a surreal moment and I got straight on the phone to Amber to give her the news. As my counts increased daily, I felt much more alive and human. For 5 days there at one point I did not get out of bed except to visit the toilet or have what little to eat I could tolerate.

    Again the staff in M5 were wonderful, I have my favourites of course but I made a point of telling them they are amazing and thanked them for what they do.

    From here, I will have to wait a little while to to see what my bloods look like in terms of tumour markers and an eventual horrid further bone marrow sample to see if any myeloma remains in my bone marrow. I really hope this is not the case!

    Thank you all again for your support, I will post more as I find out.

    For now, I am finally home and there is no feeling quite like being with my family

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    • 21/04/2023 by Amy J

      Thank you for taking the trouble to send us an update, Will. You're a brave man. I hope the rest of your journey goes wonderfully well. God bless you and your family. Amy

  • Beach Hop and Milkshakes

      28 March 2023
    Posted by: Will Hamilton
    Main image

    For the last week, we have been making the most of our time together as a family, parking up our 1997 van, jumping in the back and watching Beach Hop cars cruise our little town. The first time in many years I have not worked the event, it was nice to sit back and see it from another perspective.

    Staying away from people is not normally what I am about. However with high dose chemo and a lengthy hospital stay coming up it is the only sensible option to stay healthy and give myself the best chance. In a short while I will be going for a month stay in hospital. I am told I will be very sick, on top of lowering daily blood counts and the constant hope that my stem cells graft back to heathy, cancer free bone marrow.

    For the next update, Jack and I will have got our hands on a 1976 kitchen stand mixer, Hot Cross Buns are first on the test list.

    Keep safe and take care

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    • 25/04/2023 by Brendan

      Great to hear Will that you are through that tough stage of treatment. Stay strong in the fight so many people are around you and wishing you a speedy recovery. God Bless my thought and prayers are with you and your family.

      Kind Regards Brendan.

  • Harvest time

      10 March 2023
    Posted by: Will Hamilton
    Main image

    But not the harvesting we are used to.

    Earlier this week I went for a pre-planned admission to Hospital to collect my stem cells, also known as Stem Cell Harvesting.

    Late last week I began injecting myself twice a day with a growth factor that stimulates my bone marrow to produce, in mass, immature 'baby' cells or stem cells. The downside of this was it makes bone marrow work overtime and creates a fair bit of bone pain around the lower back and long bones. Managed this pretty well with paracetamol.

    I was connected to the machine in the picture on the left with one needle in each arm. The machine takes blood from one arm, processes it and targets a specific part of my blood where the stem cells are, filters that out then returns the remainder of my blood through a needle in my other arm. A fairly painless procedure however the downside was I had to sit still for around 6 hours at a time, like actually sit still like I am in the picture. No bending elbows, no standing etc. Fortunately I did not have to go to the toilet.

    With me the entire time operating the machine and making fine adjustments were two NZ Blood nurses, Si Woo and Shem. They certainly made the procedure entertaining with their humour, pushing buttons on my laptop when a Netflix episode ended and even scratching my my back when I got an itch.

    The target was for 7.5 million stem cells, at the end I think we got around 8 million which is great because the thought of being hooked up to the machine for another day was enough to make me lose sleep!

    Once these cells are tested and deemed viable (hopefully) they will remain frozen and some will be returned to me after being wiped out by a high dose of chemo, scary sh*t I tell ya! I will then hopefully have enough cells left over for a further two transplants, depending on how things work out in he future. It is hard to forget that Myeloma is not curable so those cells going forward will give me precious time with my family while we continue to look at other options for treatment, hopefully something a bit more permanent. The reality of even thinking about a more permanent option would not be possible without the generous donations I have received from you all.

    Again a big thank you to the NZ Blood nurses and all of the staff of Ward M5 at Waikato Hospital, they're great people and do amazing things with the amount of pressure they are under on top of resource constraints

    Happy Friday everyone, have a great weekend :)

      3 comments  |  Login to leave a comment

    • 10/03/2023 by Greg

      Way to go, Will!

      If an A for attitude counts, you're on to it 🙂👍

      Good luck mate.

    • 10/03/2023 by Yvonne

      Hi Will, great to hear from you and to hear that you are so willing to share your journey with us. You are doing a grand job. Keep your head up and know that you have a lot of people who are sending you positive thoughts. All the very best to you and your family. Yvonne McDowell

    • 14/03/2023 by Bernadette

      Hi Will, my sister has just past her 13th yearly checkup of myeloma free living after her stem cell transplant. Getting to the transplant stage was where she really needed support as you are aware. You have a wonderful attitude. All the best!

  • Small town shindigs

      17 February 2023
    Posted by: Will Hamilton
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    Hi everyone, hope you are all doing well after the carnage from the cyclone! Such a significant event with so many people displaced and affected more than most. There is always someone else worse off and I think our friends down the line in Gisborne and Hawkes Bay deserve some support, we got off pretty lightly up here!

    Again we are completely blown away and humbled by the support of everyone near and far. Last night a local couple Allen and Maxine hosted a fundraiser event named “Good Will”. Fundraising for the continuation of my treatment. I was speechless most of the night, around 90 people all willing to donate to our cause without us asking or expecting. This community and the people in it are absolutely amazing.

    Thank you Whangamata community and everyone that donated, donated goods and services to be auctioned and showed their support.

    Equally as much thank you to everyone on this page who have contributed big or small, it all makes a huge difference!

    Take care everyone and have a great weekend

    Will, Amber and Jack

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  • Three's a crowd

      7 February 2023
    Posted by: Will Hamilton
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    But four is more so! We let the cat out of the bag today...We are pregnant!!

    Now before people start saying 'you crazy idiots, what are you thinking???!!' There is an order to this seemingly courageous and ambitious sequence of events, I promise you.

    On the 21st of November 2022 I went for my full WOF at the Doctor. I went over the road and had my bloods taken like the good boy I am. I got home that day and Amber was fluffing around with Jack trying to give him something to give to me. Jack wasn't having a bar of it and Amber ended up giving it to me; a positive pregnancy test!! We were over the moon and so happy. Now remember at this point I had absolutely no idea what I was in for!

    The next morning 22nd November, I received a message through my health app from my Doctor indicating I had abnormal blood results and that I need to pick up a form for more blood tests. Interpreting the blood results and reading a comment from a lab Haematologist saying 'Myeloma needs to be excluded' made my heart sink.

    As you can see we went from the biggest high to the biggest low in a matter of hours.

    When our world seems like it is crumbling, we look at the good things that are happening all around us, be it the support of friends and family, the generous donors who are potentially saving my life and giving my family more time with me, our amazing friends who have done things for us/given things to us, just like the photographer Jacob who took the photo attached, Andrew my dear friend who helped me change the cambelt and water pump on my beloved 1997 van last week, Nikki one of Ambers friends who is a serial baker dropping off baking and cooking non-stop, friends who have donated outside of this page (names withheld of course ;) ), friends who won't let me pay for a beer at their bar and others who I can't think of right now.

    Three's a crowd but four is awesome...technically 5 when we count Irie the dog

    Take care everyone :)

      3 comments  |  Login to leave a comment

    • 08/02/2023 by Frances

      Kia Kaha Will. Congratulations on your awesome news. A new life is so special.

      Good luck with your journey.

      Fran

      (Blair’s Mum)

    • 08/02/2023 by Raewyn

      That's fantastic news, really happy for you 😀

    • 10/02/2023 by Nicola Davison

      What wonderful news for you all!

      Congratulations!

  • When it rains it pours

      2 February 2023
    Posted by: Will Hamilton
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    No I’m not meaning the weather. On Tuesday morning I woke up with a heart rate of 145 and a temperature, this is when I knew I was in for it. I had picked up an infection from somewhere which probably wouldn’t bother most people, but because of my lowered immune system it kicked my ass! Ambulance and all I was on my way to hospital. We met with an advanced paramedic on the way who gave me Antibiotics. I have nothing but great thanks for the Ambo crew (Barry and Claire, Lisa and one other I can’t remember) who took care of me, Thames hospital staff, particularly my nurses on the ward Sharan and Jennifer who made a bed ridden stay comfortable and fun, support staff Jay Jay (just like she said, she makes one hell of a hot chocolate).

    What made this day even more difficult was the fact Jack was to have his Ear Grommet and Adenoid surgery in Hamilton that day. A last minute decision for Amber and Jack to get to Hamilton and go ahead with it was made before I was whisked away. A big thank you to Amber’s mum who joined them taking time off work to help also staying the night over there, driving them both home the next day. Amber is nothing less than a super-mum dealing with all that stress, probably better described as a cluster ….

    Now I’m home and continue to improve. We have received countless messages of support, flowers, baking and offers to make things easier. Thank you everyone 😊

    Jack is doing just fine, as I write this he is smashing a muffin baked by our friend both into his mouth and the carpet 🤦🏼‍♂️

    Take care and stay healthy

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  • Wet weekend activities

      29 January 2023
    Posted by: Will Hamilton
    Main image

    First things first! Thank you all both new and existing donors for your amazing support. We really don’t know what to say other than thank you again so very much!

    Everyone who knows me knows I love getting amongst the action. So this week/end with major road failures,

    Floods, infrastructure challenges and lots and lots of rain it’s been rather frustrating that I cannot get in the blue suit and go out there to do my thing, helping people! This is because my doctor has said I can’t due to infection risk and weak bones. Nothing against my Doctor, she is amazing…even if she refused to sign me off to complete my fitness test…understandable when she reads we have to push and stop a 450kg trailer as part of it 🤷🏼‍♂️

    Instead this weekend we put together a bed flat-pack. Yes we had screws left over and no I can’t blame Jack! It was great fun with Jack being Captain of the battery drill. Just a slight logistical challenge of no mattress yet, a collapsed major state highway means couriers can’t get here as efficiently. Either way I think Jack approves of his future new bed.

    In other news I now had a timeline for my Stem Cell

    Harvest. A little scary knowing that’s the first step before high dose chemo…. More on that when the time comes.

    Again thank you all for everything, it means the absolute world to our family, knowing we now have options further afield because of the generosity of you amazing people.

    Take care Will, Amber, Jack and Irie x

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  • Photo Bombs, appreciation and weekends

      21 January 2023
    Posted by: Will Hamilton
    Main image

    As the days go by and the number of generous donors like yourselves donate to us increases, the more we are taken back and yep that word again, humbled. There simply is no other word to describe it!

    It has been an extremely busy week with work here in Whangamata with not a lot of sleep. IYKYK!

    This weekend we have made the most so far. Bike rides, coffee, afternoon naps while Jack has his day nap and just now we have got back from our favourite waterhole not far from us. Memories and activities don’t have to cost anything at all. We are focused on making memories and doing the things we love. Leave the worry of changing my prognosis to the doctors; because let’s be fair, only the doctors and science can change that stuff.

    For now, here’s a photo of me and Jack. Was meant to be just Jack… Sorry Amber 😜

    Take care all and a very big thank you to all who have generously donated to help us x

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  • Massive Thank You

      15 January 2023

    Thanks so much to every one of you for kindly donating and for sharing those beautiful messages of support for Will and his family.

    When I set the goal to 20K I thought that was a very ambitious goal and I hadn’t anticipated the level of love, caring and generosity that would be shown by so many wonderful people.

    I’m increasing the goal at this time because there may be other treatment options for Will overseas. These treatments cost significantly more than those he is currently undergoing (some in the hundreds of thousands).

    This new goal is a very ambitious one and I totally understand that not everyone will be in a position to donate.

    Will and Amber are already completely blown away by the kindness and generosity that has been shown by you wonderful people.

    Sending love to all of you and again a huge thank you ❤️🙏

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  • Thursdays

      12 January 2023
    Posted by: Will Hamilton
    Main image

    Thursdays are the worst day of the week for me. It is the day that I have to take a very large dose of steroids and inject myself with a Chemotherapy agent (pictured). How the steroids make me feel is very hard to explain. I lose all ability to focus on a task, can't hold a conversation because my mind wanders, my tolerance is significantly reduced and worst of all I cannot sleep. To counter this I have to take half a sleeping pill on a Thursday night before bed. Thankfully though I know these drugs are doing me good.

    I got some blood results back yesterday and they are looking really good. The drug I take that this page will help fund is making a huge difference to my markers - although my specialist has not commented yet, I know by the protein levels indicated, that things are looking very very positive.

    Again a huge thank you to every donor. It is because of each one of you that I am able to source this medication and get these wins.

    Take care

      1 comment  |  Login to leave a comment

    • 12/01/2023 by Raewyn

      That's really good to hear, so pleased things are looking up 😊

  • Feeling overwhelmed

      9 January 2023
    Posted by: Will Hamilton
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    With more than 300 generous Donors and a significant amount of money donated, Amber and I are feeling very humbled and overwhelmed. From the bottom of our hearts we thank each and every one of you. The messages of support flow thick and fast to our inbox. We are looking forward to some summer like weather again so we can go and enjoy some family time at our favourite waterhole once again. The photo is of us on a hot sunny afternoon recently there. For now with this impending storm, it’s time to snuggle up on the couch and remember to be thankful for what you do have. Again thank you for your generousity and thoughts.

    Will & Amber

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  • Just WOW!!

      6 January 2023
    Posted by: Will Hamilton
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    Hello everyone, it is safe to say I am truly humbled and overwhelmed by the support that everyone has shown. Neither Amber nor I would create a page our-self because we do not like people fussing over us, so a massive thank you to our dear friend Anna who created this page for us.

    The amount raised in less than 24 hours is astonishing! I thank you all dearly for your donations. Like I say to people who I explain my condition to....You go and get injured and cannot work, you will get your income protected and paid by ACC. However go and get cancer, an ultimately fatal one as in my case, you get nothing of the sort. All of your donations are truly truly appreciated and will be well used directly toward my treatment.

    The photo below is of me in Thames Chemo unit 05/01/22 - this was me getting a Pentamadine infusion. Pentamadine is a drug which will protect me from pneumonia. Multiple Myeloma patients are not good at regulating the fungus that exists in all of us that leads to Pneumonia. This infusion was 3 hours long with 1 hour prep time before it began. In addition to that the 50 mins travel time each way to the outpatient clinic. The staff at Thames are amazing

    My next infusion will be later in Jan with a drug called Biphosphinate - This is to increase the strength of my bones. Because of the amount of steroids I am on this can weaken bones, in addition to that Myeloma being a cancer inside the bone (marrow) this also weakens bones.

    I will endevour to keep you all updated on my journey. The grim reality is that Multiple Myeloma is not a curable cancer and my life will be shortened significantly. For now we will take the years and months we can get and make the most of them.

    Thank you all current and future donors once again. Again a huge thank you to our friend Anna for getting this off the ground.

    Take care everyone

      1 comment  |  Login to leave a comment

    • 08/01/2023 by Hayley

      So sorry to hear that you're on this journey Will...the memories you're making with Jack and Amber are so special - you're such a fun Dad! and an awesome human. Thinking of you and your family often. Sending positive vibes your way xx