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Help Simon fight his Cancer for his Kids

  • Devastated

      17 June 2024
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    I'm devastated to let you know that my darling Simon passed away earlier today. Words can't describe the pain of losing my Simey. We had a cracker of 25 years with highs and lows and I don't know how I will face life without him.

    He fought and fought to stay around as long as he could for me and his babies.

    We are well supported and feeling the love. Our food cupboards and freezer are full for now.

    I would like to thank you all for supporting us on this journey.

    Much love ❤️

      13 comments  |  Login to leave a comment

    • 18/06/2024 by Lorenzo

      I'm deeply sorry for your loss. It's completely normal to feel unsure about how you'll face life without Simon. Take things one day at a time and lean on your loved ones for support. You don't have to go through this alone. My thoughts and prayers are with you and your family during this incredibly difficult time.

    • 18/06/2024 by Kate Twigg

      Sending you strength and love as you navigate this new part of life without Simon, I’m so sorry. I really hope you can find peace in the memories you’ve created and the wonderful moments and time you were able to share throughout your life together. Kate

    • 18/06/2024 by Olivia

      So sorry for your loss, our hearts have been with you on this journey. 🫶

    • 18/06/2024 by Daniel Johnston

      I’m so truly sorry for your loss. We were all really routing for Simon to beat this. He fought right to the very end. God bless you and your family 🙏🏻

    • 18/06/2024 by Naomi

      I am so so so sorry Libby. Xxx

    • 18/06/2024 by Dorothy

      I feel so sad for you, it has been such a hard journey. Much love to you and your family. Kia kaha XXX

    • 18/06/2024 by Zandra

      ❤️

    • 18/06/2024 by Gay

      I am so sorry to hear of Simon's passing, Libby. I am sending you and the kids love. It must be so hard to lose someone you have shared your life with for so long. Simon was brave in his fight and so were you. You will in time remember only the good times and forget the struggles. And always know that you were there for Simon in his battle. xxx

    • 18/06/2024 by Allyson

      Hi Libby. My heart goes out to you and the kids. Cancer is a bitch. First your dad then my mum. From yor family across the ditch. Lots of love Ally and Randell

    • 18/06/2024 by Chris

      I’m so sorry…. thinking of you and your babies and sending you lots of love xx

    • 18/06/2024 by Helen

      Thinking of you and your beautiful children on hearing this today. So sad. Much strength to you all ❤️.

    • 19/06/2024 by Kisione

      So sorry to hear this sad sad news Libby, may the future hold good fortune for you and the kids

      ❤

    • 19/06/2024 by Susan McLaren

      What sad news. Still you know Simon fought hard and you left no stone unturned. Simon was greatly loved and will be sadly missed. It's good to hear you and the children are well supported. All the best for the future though it will be difficult for a while.

  • My heart is breaking as I write this

      14 June 2024

    Hi everyone,

    I wanted to let you know things aren’t going well with Simon. Over the weekend, it became obvious with how weak and tired he has become that the disease is progressing at pace.

    We have been at North Shore Hospital since Tuesday and the medical team advised me on Wednesday to bring the kids in to say our farewells. This was heartbreaking and traumatic as I’m sure you can imagine. Being so little, they have varying degrees of understanding of what death and heaven is. But we’ve told them there’s lots of ‘up the wahs’ and our old chocolate lab Roxy will be there to welcome him.

    In true Simon form, he is doing things in his own time. He sleeps most of the time and his pain is being managed by the amazing team at Ward 5. They’ve bought in a second bed (which they said they’ve not done before) so I can cuddle up next to him. I think he’s a bit of a VIP for the spotlight he has put on the poor treatment options in NZ.

    I would like to thank you all for the generosity and support that has been given to our family.

    That’s all for now,

    Love Libby

      12 comments  |  Login to leave a comment

    • 14/06/2024 by Nichola

      Oh Libby, my heart is breaking for you too.

      You are right, Simon is a VVVIP person in the myeloma and cancer world, and you. He has done so much in sharing his story, and words will never be enough thanks.

      I'm so sorry you are going through this, you are an absolutely amazing wife and mum.

    • 14/06/2024 by Nicole

      Bless you all. Sending special blessings and prayers for Simon. I hope that he is pain free and comfortable. Prayers for you and your children also that you can bear the unknown and take each day knowing that you will have angels guiding you and sending love and healing.

    • 14/06/2024 by Judith

      Oh Libby, my heart breaks for you. I so hope Simon doesn’t have any pain.

    • 14/06/2024 by Gay

      Oh Libby, thank you for writing. I can only imagine how hard it is for you and Simon. I think it's so horrible that people who are ill have to fight for the drugs and the treatment they need. There's nothing I can say to comfort you except to say that I am sending my love to you and your family. Look after yourself as much as you can for the kids xxx

    • 14/06/2024 by Naomi

      Libby this is absolutely heartbreaking news. I can’t stop crying. Praying for you all as you navigate this very unfair and impossibly difficult time.

    • 14/06/2024 by Lorenzo

      I am so sorry to hear that. My prayers are with your family.

    • 14/06/2024 by Suzanne

      Sending lots of love to you and Simon. Certainly VIP and legend. Glad the hospital are looking after you.

    • 15/06/2024 by Chris

      I’m so sorry to hear this news Libby…

      You Simon and your family are all heroes and have been through so much in this journey together and this is not the outcome everyone wants for you all…

      I wish you all the best for your future without Simon and that he is comfortable and pain free…

      Lots of love to you all xxx

    • 15/06/2024 by Kelly

      Libby we are sending pink bubbles and white light to you and your whānau🩷🤍My heart breaks reading this, Kia Kaha wāhine toa...Simon is such a fighter and has done so much with sharing his story for the Myeloma community. Thinking of you all at this very difficult time xx

    • 15/06/2024 by Susan McLaren

      Hi Libby, what sad news. Thanks for bravely sharing your journey. Life isn't fair. Your children deserved to grow up with their dad and you with your chosen partner. I hope the next few days are comfortable for Simon and you find some peace as you say goodbye. Thinking of you and the family, Sue

    • 15/06/2024 by Karen

      Libby - My heart is breaking for you. Thank you for sharing your families story. I am so so sorry it hasn't been a happy ending for you. May all the love I'm sure you have around you look after you all. Simon - you fought a massive fight - be at peace. XOXOXO

    • 18/06/2024 by Karen

      😭💔 hugs for you all ❤️❤️❤️

  • Still in the trenches!

      6 June 2024

    We are limping along here, Simon is still suffering some nasty side effects but ready to start cycle 3 next Tuesday - this will involve both drugs being administered for this cycle and onwards. He has lost ALOT of weight, and is trying to keep on top of hydration and protein drinks as eating is out the window between his mouth and lack of appetite. But he is battling on and will keep fighting.

    Myself and kids are doing ok, it is a challenging time at the moment but we are well supported by family and friends and some meals being dropped which helps me immensely.

    In a side note, I wrote in a previous post about our car crapping itself. We'd like to say a massive thank you to Mazda New Zealand and the team at John Andrew Ford and Mazda in Henderson who arranged for a brand new transmission to be shipped over from Japan, and put into our car. They generously covered the part cost and we were more than happy to take the cost of labour hit (well, not overjoyed but better than the alternative!) which was ALOT less than a new transmission. We are so grateful.

    So thats us from here. Much love to you all and thank you for your continuing support.

      3 comments  |  Login to leave a comment

    • 06/06/2024 by Suzanne

      Sending love❤️

    • 07/06/2024 by Sophie

      Hello from the Teal Valley - I was so sorry to hear of your car problems, how stressful and the last thing you needed. I was relieved to hear you got some support from the Mazda dealers, good on them!

      Your amazing tenacity and ability to find something positive no matter what is so inspiring and very humbling. Thank you for all the wonderful updates too, your generosity is amazing 🙏🏼💜 Sophie

    • 15/06/2024 by Dorothy

      I have no words to help you through this, I wish I could do something more to help you. You are an amazing family and will get through this dreadful time. Hold on tight to your lovely memories of Simon, your children will remember him as an amazing person throughout the rest of their lives. With much love xxx

  • Cycle 2 has begun - I guess its Trials and Tribulations #5

      16 May 2024

    Hi from the trenches! We have had a bumpy few weeks including our newish car shitting itself but thats all sorted now (or rather it will be in 3 months time once a new transmission is fitted!). Cycle one involved introducing the trial drug - small, medium and a large dose (the large will be the usual dose). After the third dose, along with the usual fevers, his skin has dried out and is peeling, and, most painfully, he lost the top layer of his tongue, and inner mouth. His tongue was fire engine red and looked so painful. We are told this is the worst and it will gradually improve, and it is albeit slowly. This makes eating near impossible (think of when you burn your tongue on a hot drink - except that feeling stays with you and its your WHOLE mouth). So its protein shakes, smoothies, ice blocks, custard, yoghurts, dairy foods, anything cold. He's dropped 10kg since the start of the trial.

    We have oral steroids, steroid mouthwashes and little tablets that can coat the inside of his mouth and tongue which provides some relief. We know it will improve and hopefully go away completely - and its not just Simon suffering this either, its at least 3 of the other 5 participants.

    On Tuesday he had a second drug introduced called carfilzomib which will be used in this cycle with the study drug.

    So, thats just an update from us. Laying low and trying to make Simon as comfortable as possible! Thank you all for reading my very long essay!

    Love Libby x

      6 comments  |  Login to leave a comment

    • 16/05/2024 by Suzanne

      Sending love, that sounds very painful. Hope the car is sorted. You definitely didn’t need that.

    • 16/05/2024 by Jean

      It never rains but it damn well pours , on this journey! Side effects our daughter said , this sh*t must be working ! Long term I will be thankful that this was part of my journey to recovery. This was 20 years ago . She is teaching full time , lives on the squash court . Physical reminders remain , but they are skin deep . We have to have hope that you too , do these extremely difficult hard yards , in preparation for a full recovery. ❤️‍🩹.our sincere wishes for this outcome ! It certainly does happen . ❤️Kindest regards. Jean .

    • 16/05/2024 by Gay

      Thanks for the update Libby. The treatment sounds awful - hope it will improve soon. Maybe it means it's working. All the best to you both and family, Gay

    • 16/05/2024 by Sarah

      It must be very tough, and for you as well Libby with children to consider. Sending all the best and better days ahead (my husband also has Myeloma).

    • 16/05/2024 by Robby

      Hi Libby I was grateful you had the time to write an update on Simons journey. I am always so interested in his progress Horrendous side effects he is going thru. That brought tears.

      You are daily in my prayers & I hope this next round is more gentle on him & you. It’s so hard watching & knowing there is so little you can do to help other than support. I’m sure he appreciates his family so much. Kia kaha. Robby

    • 16/05/2024 by Chris

      Thinking of you all…..sending hugs and lots of love 🥰

  • Trials and Tribulations 4

      1 May 2024

    Well had the full dose of the subject drug yesterday. 50% more than last week and the target strength. Normally I'd be counting down the hours left of observations (~8h) and going home but not today! Large cytokine response to the drug which isn't unexpected but it's left me with a 39+ temperature since lunchtime. Had some steroids to try and bring it down but thats pushed the hours of observations out a bit. Highly likely I'll be in for a rough overnighter.

    To top it off the teenager is Covid+ so I'll have to dodge him when I do get home. Tbh it won't be difficult because he doesn't leave his room much 😂

      3 comments  |  Login to leave a comment

    • 02/05/2024 by Gay

      crossing my fingers for you Simon!

    • 02/05/2024 by Dorothy

      Kia kaha Simon. Thank you for the update x

    • 02/05/2024 by Suzanne

      Bloody COVID. Glad to hear you’ll be home soon.

  • Trials and Tribulations 3

      24 April 2024

    Covid negative now which is good but still have the runny nose, cough, and slightly elevated temp symptoms for a wee while I'd say.

    Had the option to delay things another couple of days but opted to restart the dosing on schedule as figured I already felt like crap so potential fevers on top of that wouldn't matter. Now just 12 more hours of observations to go until I'm outta here and back in my own bed at ridiculous o'clock.

    Simon.

      2 comments  |  Login to leave a comment

    • 24/04/2024 by Suzanne

      Take carexxx You need to be home for the ANZAC game.

    • 25/04/2024 by Gay

      Good luck Simon!

  • Trials and Tribulations 2

      16 April 2024

    Today was meant to be the 2nd dosing day. Unfortunately I tested positive to Covid yesterday so am on the anti-virals for 5 days. Not sure how that affects things but I'm hoping things just get pushed back a week.

    After dodging it for so long it looks like one of the twins brought it home in the last week of school :(

    So a few days and nights of fevers for me to look forward too before getting back on the good stuff and experiencing some more days and nights of fevers.

      1 comment  |  Login to leave a comment

    • 16/04/2024 by Suzanne

      Buggar. Take carexxx

  • Trials and Tribulations 1

      10 April 2024
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    Cycle1, Day 2, Hour 20. Only another "day" to go. No side effects yet although the dose they gave me was really small and they'll step it up over the course of the next few weeks.

    Only a few hundred on the trial world wide and a handful in NZ. If some things are vague it's on purpose. I'm not allowed to say anything that may identify myself to the trial sponsor as it's a blind trial so everything is anonymised - I'm just a number in a spreadsheet to them. Although given recent media articles, the disease I have, the number of trials (in the public domain too) and the fact I'm in nz doesn't make it too difficult to figure out. If anyone wants more info feel free to message directly.

    Simon.

      2 comments  |  Login to leave a comment

    • 12/04/2024 by Simon Young

      You're looking well mate. Hope you're feeling good too.

    • 12/04/2024 by Gay

      So exciting Simon for you and your family. Fingers and toes crossed!

  • Some exciting news and we've moved the goal posts!

      9 April 2024
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    Hi everyone! Some great news from us here at Team Clark! After being told we had missed out on the trial deadline a month ago or so we received a call before Easter to say they had a spot for Simon after all, and his numbers had increased enough to make him eligible. So the week after Easter was a flurry of scans, bloods, MRIs to confirm his eligibility and today is his first dose. The "trial drug" is a bispecific drug that attaches to the myeloma cells and your immune system t cells bringing them closer together, so the t cells can kill the myeloma cells. It is used in combination with another protease inhibitor drug. The trial goes for a year so fingers crossed.

    When we set up this page, it was specifically to pay for two drugs - pomalidomide and daratumumab and as at April 2024 we have spent $50k on those drugs. We aren’t incurring medicine costs during the trial.

    We have a plan B up our sleeves too. We were contacted via Nick our Herald reporter from a man who has had car T therapy in China, two years ago and has been in remission for the last couple of years. This is the best treatment you can get for Multiple Myeloma and we always thought it was out of our reach. But it's "only" around $300k, so we have moved the goal post and our funds raised will be going towards this treatment in China once the trial is over, or, Simon doesn't respond well to the trial.

    From time to time, we may use funds if we’re short for day-to-day bills.

    We cannot express how grateful we are for all the help we are receiving and hope one day we can pay it forward.

    We thank you all for your help, sorry for the lengthy update!

    Please keep the prayers going!

    Love Simon and Libby and family

      0 comments  |  Login to leave a comment

  • Milestones!

      15 March 2024
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    Hi all

    Simon is doing well at the moment. Appetite and mobility back which is great!

    Simons numbers continued to improve which is great BUT they were too good to get onto the trial!

    Even the doctors were surprised at how he responded to the Vtd PACE chemo. All the myeloma blood markers fell into the normal range which meant he wasn't able to get on the trial (at the moment)! Super frustrating so we need to wait for them to rise (they are, just slowly)!.

    In the meantime we are enjoying our time together and yesterday our daughter turned 5 and I felt super lucky Simon was here to celebrate ❤️

    As always thank you for your support

    Much love, Libby and Simon

      0 comments  |  Login to leave a comment

  • Another week, another blood test.

      27 February 2024

    More good news from yesterday's tests. Most of the markers are well on there way back to normal and still no need for any transfusions again. Feeling a lot better and my mobility is picking up and appetite is coming back. Amazing what a couple of weeks off chemo does and also shows just how much it does hit you.

    Simon.

      1 comment  |  Login to leave a comment

    • 27/02/2024 by Suzanne

      Great news Simon. Lots of lovexxx

  • Blood Test Monday

      19 February 2024

    A pleasing result from my blood tests this morning. No need for either a platelet or a blood transfusion today! The numbers are still pretty dire but moving slowly in the right direction now.

      4 comments  |  Login to leave a comment

    • 19/02/2024 by Christine

      Fantastic news, Simon!

    • 19/02/2024 by Helen

      So good to hear

    • 19/02/2024 by George

      Any step in the right diection is good.

    • 28/02/2024 by Kisione

      So good to hear Simon keep up the good work

  • A massive thank you from an Emergency Department

      10 February 2024
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    Hi everyone. Firstly a huge thank you to you all for your donations and especially to Nick and Jason from the NZ Herald who took the time to write about and draw attention to the dire situation that patients with Multiple Myeloma find themselves in when all funded options are exhausted.

    Secondly we cannot thank you all enough for your generous donations. Times are tough for everyone so we appreciate it.

    Simon is currently receiving a blood transfusion in the ED at hospital. He spiked a fever overnight so getting checked ofr infections etc. All par for the course after receiving the intensive chemo (Vtd PACE) a couple of weeks ago.

    We will keep fighting and appreciate all the lovely messages of support we have received.

    Much love, Simon Libby and family ❤️

      2 comments  |  Login to leave a comment

    • 11/02/2024 by Jean

      Hi Simon Libby and precious kids . Kids treasure your amazing parents , and support them as you travel through this journey.❤️

    • 05/03/2024 by Robby

      So happy to hear you are improving. It’s a hard road so well done to you. I’m sure I’m not the only one praying for you. If you have a moment could you tell me name of chemo you were on & how long you took it for. Appreciate. Warmest wishes as you continue on this healing path. Robby

  • Progress and a bloody big curveball

      24 January 2024
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    Hi it’s Libby here – Simon’s wife. We are four weeks into the Dara which has been going well. However, blood tests have shown Simon’s liver is increasingly affected by the myeloma cells growing on it.

    Separately, our lovely haematologist Eileen wants to put Simon forward for a trial of a new drug cocktail. But an unhappy liver will make Simon ineligible. It's a delicate balancing act.

    So, the plan is to pause the Dara for the next few weeks while we sort the liver. This involves a hardcore chemo regime that is all the chemo at once + some new drugs.

    We know it’s going to be a lot and he’ll be in hospital for 2-3 weeks with lots of side effects including ulcers and likely fevers and infections.

    This is not new territory for us. Simon has fought a similar regime with the stem cell transplants and he is in good spirits to tackle this one.

    And it’s going to be tough so please send us all your best wishes and prayers and we will keep you posted,

    Love Libby and Simon

      1 comment  |  Login to leave a comment

    • 25/01/2024 by Helen

      Thank you for the update, my very best wishes to you all and I will certainly keep you in my prayers and thoughts.

  • Just a quick update

      11 January 2024

    Hello everyone, it's been a rough couple of weeks for Simon as his body gets used to the new drug. Extreme fatigue, not much appetite and a very hoarse and croaky throat, and, just to keep us on our toes, random fevers which required a couple of nights in hospital for IV antibiotics. So, very quiet days in our house at the moment. Simon had dose #3 today so we'll be back for number 4 next week.

    Each week as I pay the $9,700 drug fee and the administering bill ($740) I think of all of you guys who have made this possible for us to start.

    Will update again soon.

    Libby x

      1 comment  |  Login to leave a comment

    • 12/01/2024 by Simon Young

      Happy new year guys. Thank you for the updates. Kia kaha.

  • Hello Team Clark

      31 December 2023
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    Just wanted to pop on for a super quick update. Simons treatment went well and we are ready to go for dose 2 on Thursday.

    As he had to stay for four hours after, I popped home and picked up the kids from our neighbor, and ran some errands.

    I decided to bring them in with me to pick Simon up, so when I say "Dad's having his medicine today" then they know where he is. Two even had a go sitting in the chair.

    Finally, thank you all, so much for donations and help. We would not have been able to start the treatment without each and every one of you.

    Here's to 2024, Happy New Year everyone 💕🥂🎉

    Love Simon, Libby and the kids

      0 comments  |  Login to leave a comment

  • Got pinged by the temperature police

      23 December 2023
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    What a clusterf*ck yesterday was. I was due another Calcium infusion that was booked in for 8am. Thursday I tried to confirm it and was told by 2 different people there was no booking and NOT to come in. Of course I get the phone yesterday at 8:30 asking where I was. Sigh. I should have seen the signs and just given it away but I pushed on and they said they could fit me in at 2pm.

    Arrived at the day stay unit and waiting for the infusion. Nurse came and took obs as per usual and the blimmin temp was 39.1. Now I had managed to get out of a 38.3 reading on Monday during my biopsy but even I could see this was a tricky situation.

    Very long story short I was trundled off to ED. Swabs, blood tests, urine sample and xray later there was no indication of a cause of this "infection" that was pushing my temp up.

    My next temp was 36.0. The thing that amazes me is this was taken 3 hours after the 39.1 reading. It also seems standard practice for nurses not to double check an unexpected reading. From a science background you would 100% double check an unexpected reading. The 39.1 was probably legit but the things it kicks off would warrant confirming it.

    At the same time as this the bloods showed my rbc's had dropped further. I was booked in next week for a blood transfusion but seeing I was already in the hospital I may as well have it now. Hence the overnight stay and horrible breakfast served this morning.

    Hopefully out by lunchtime :)

      1 comment  |  Login to leave a comment

    • 25/12/2023 by Julie

      Standard practice when a result is unusual = odd check again! I totally agree. Saves a lot of further possibly unnecessary work.

      I how you have an extra ok Xmas day.

      Happy holidays

      Julie

  • My view for the last 4 hours.

      18 December 2023
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    Lying flat in the hospital bed for recovery from a liver biopsy. A couple of masses showed up on the MRI scan which needed to be checked. Apparently not uncommon for aggressive myeloma to find a home on your liver and deposit a few plasma cells there. They should reduce/disappear(?) once my treatment starts again.

    Just what the Dr ordered a week before Christmas, a few days "rest" on the couch trying to stop young child climbing over you.

      2 comments  |  Login to leave a comment

    • 18/12/2023 by Julie

      Hi Simon. Thinking of you. All the best with your treatment when it starts again. I hope you and your family manage to have an ok Xmas. Julie B

    • 18/12/2023 by Suzanne

      Take care matexxx

  • Daratumumab ready to roll.

      6 December 2023
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    A while since the last update as I have been busy with extra blood test, x-rays, CT, and MRI scans. So far all clear which is pleasing but does mean the cause of my breathlessness still hasn't been found. It's getting quite bad now where I'd wait for an elevator rather than take a single flight of stairs.

    On top of this we met with the private Haematologist about the Daratumumab treatment. He is the same Dr who saw me in the public system for my 2 stem cell transplants last year so he already knows most of the history. Everything went well and I can start treatment when I want to. Likely to start once the last of these scans etc come in. Estimated total cost was $240k. Not a surprise but always a huge number to look at.

      0 comments  |  Login to leave a comment

  • Bye bye Pom

      25 November 2023

    So the Pomalidomide wasn't effective and the Dr has suggested it's not worth carrying on with it. Each blood result is showing an increase so it's time to roll the final dice.

    With the money raised we can now at least start down the Daratumumab path. Initial consult with the private Haematologist next week. Looking forward to it and optimistic it's going to have a positive result.

      1 comment  |  Login to leave a comment

    • 26/11/2023 by Simon Young

      Thinking of you Simon. Was so great to see you the other day!

  • The value of family

      22 November 2023
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    A huge thank you to my extended family, the aunties and uncles and throw in a cousin for good measure. Weekend before last they came around for lunch and put the pool up, something I couldn't even dream of doing these days. The kids of course were at a ridiculous level of excitement which was pushed to ear splitting level (sorry neighbours) when the water tanker showed up to speed up the job.

    It's still far too cold for me to brave getting in just yet.

      0 comments  |  Login to leave a comment

  • Good days and Bad days

      20 November 2023

    Bad days used to be once every now and then. Over the past 6-8 weeks however ever since the Lenalidomide became ineffective and I switched to Pomalidomide it seems the side effects have ramped up and now the bad days are far more common. Throw in the Etoposide and the mouth ulcers and infection and it feels like I haven't had a good day for a while.

    Today was a good day though.

    Blood results came through and are still going in the wrong direction but that was expected. What was totally unexpected was the amount of donations coming through to the givealittle page. Mindblowing that total strangers would give so much especially during these times when money is tight. Its got to the point where I think we can say to the Haemotologist this week that we're in a position to put Daratumumab on the table as an option. Start treatment and get through those first 2 months which cost around $90,000 and then worry about the rest after that.

    So that is why today has been a good day. Thank you so much to everyone who has helped in anyway.

    Simon.

      2 comments  |  Login to leave a comment

    • 20/11/2023 by Nicole

      You are more than welcome Simon. So pleased to hear the fundraising is heading in the right direction and you could start the Daratumumab. Keep up the fight, I know its hard but a calm positive mindset will help. blessings to you and your family.

    • 20/11/2023 by Suzanne

      Thoughts are with you Simon, so good you are feeling the love and support, it’s awesome. Boo to Aussie winning the cricket.

  • Thank you all so much!

      19 November 2023

    We have raised nearly $30,000 towards our goal since Friday when the $5 Drive was created! We are blown away and so grateful that there are strangers out there willing to help. We can never thank you enough.

    We have also had nearly $3,000 raised from a raffle that the Te Atatu Village Kindergarten held which was amazing to have such community support behind us.

    Simon's sister Megan in addition to raising nearly $5k in a concert also reached out to a previous employer who also donated to us.

    We have also been given meals, prezzy cards and supermarket vouchers from family, neighbours and friends to help us with our day to day expenses.

    We feel so blessed to have this help. Thank you.

      0 comments  |  Login to leave a comment

  • A rough couple of weeks

      14 November 2023

    Hi all, super quick update. Unfortunately it does not look like the Pom is doing the job at reducing the numbers that need reducing. The Dr's have added in a new chemo drug (funded) called etoposide that is taken over four days at the start of a cycle. It's pretty toxic and has left Simon with some pretty shitty side effects, the worst being ulcers in his mouth, making swallowing anything difficult. Soft foods and ice blocks are on the menu at the moment.

    We are desperately hoping this drug will work alongside the pom and bring down the cancer numbers. If not then we will have to try a couple of doses of the dara, which is the $20k a dose drug.

    As always thank you all for your support. It's really really appreciated. Please keep sharing xxx

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    • 15/11/2023 by Suzanne

      Thinking of you all. Hope you get some pool time. Simon you are a champion. Love Suz and Michael

  • A goal update and thank you

      24 October 2023
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    Hi all, firstly thank you so much for all your contributions. We continue to be gobsmacked at the help we are receiving. So, thank you. We keep being asked how much our goal is so have added a goal in. This will get us a year of the dara (the $20k a month one!). Again, thank you and we would be grateful if you could keep sharing our page.

    Also a thank you to the Te Atatu Best Start daycare (our niece Imogen attends) who recently held a "wheels day" where their children rode their bikes and scooters and also donated a coin. Was super sweet to receive a card too, so thank you Best Start. We feel blessed to live in such a supportive community. 💕🙏

    That's all from us at the moment team!

    Much love x

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    • 25/10/2023 by Wendy

      🙏🏽🙏🏽🙏🏽🙏🏽🙏🏽 and hugs for you all as I read this update Simon.

  • Side effects of a new drug regime

      17 October 2023

    I've been quiet on the updates as the POM has really taken it out of me these last 2 weeks. Not just the usual tiredness but more exhaustion and so very very quick to get out of breath. Lots of bone pain in the hips too so my stem cells are definitely getting a going over - nothing a nice powerful pain killer won't resolve.

    Blood test today so an anxious weeks wait to find out the state of my light chains. Fingers and toes crossed I get a few months effectiveness out of this new drug...

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    • 17/10/2023 by Katherine

      All fingers and toes crossed, Simon!

  • POM POM POM POM...

      4 October 2023
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    Day 1 of the new treatment plan. Pomalidomide is a derivative of Thalidomide and Lenalidomide which I've responded too well initially in the past so here's crossing some fingers. Not a funded drug in NZ and I don't actually know how much it is here ("Len" is $7,600 so assumption this would be more or similar). Much much cheaper if you can source it from elsewhere.

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  • Pins and Needles

      24 September 2023
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    Bortezomib is one of the drugs I take for the MM. It's a proteasome inhibitor which causes fast growing cancer cells to die from a build up of proteins in the cell. A side effect of it is peripheral neuropathy, a tingling in the hands or feet caused by nerve damage. For me it sometimes manifests as having "cold feet" although in reality they are completely normal. A simple fix is to wear a pair of socks to bed. I think maybe the socks provide pressure to the nerve endings and the brain then realises they still exist rather than having no feedback and giving your the ice cold sensation.

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    • 24/12/2023 by Michael

      Hi Simon...After my high dose chemo prior to the stem cell transplant I ended up with neuropathy in the feet and hands..I could not even walk properly having no feeling in my feet...Was tripping over myself...Slowly but gradually it has got so much better..I found walking bare feet in the sand every day and swimming in the sea was the best healer..I also do 15 mins twice a day of Qi Gong...the movements are very simple but increase the inner energy levels and settles the psyche from going into dark places..People with cancers suffer from paranoia because we feel some thing and think the cancer invading us again...When I have my monthly bloods it eventuates Im still in deep remission ...my mind settles again..Qi Gong has really helped me...