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Help Simon fight his Cancer for his Kids

  • 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.

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    • 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.

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    • 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.

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    • 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

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  • 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

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  • 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.

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    • 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

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    • 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

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    • 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

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  • 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.

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  • 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.

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  • 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.

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  • 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...

      1 comment  |  Login to leave a comment

    • 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...

  • Bone Hardening

      21 September 2023
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    One of the effects of Multiple Myeloma is that it causes the calcium in your bones to dissolve out into the blood stream. This was actually the first non-generic symptom that caused me to go to the Dr initially. I had difficulty breathing from what turned out to be a fractured rib - only problem was that there was no obvious injury that caused the fracture. After diagnosis in hospital I had an MRI which showed multiple rib fractures, vertebrae and pelvic lesions. All completely unknown to me! Earlier on this year I had a trip to the dentist for a cavity, or so I thought. Turns out everything was fine. Again the removal of Calcium from the enamel in the tooth caused the nerves to be closer to the outside of the tooth giving the feeling of the need for fillings.

    So about every 3 months I have a 15 minute IV infusion of a "bone hardener" at the outpatients clinic which reverses the flow of Calcium back into the bones. A fairly mundane process which seems to do the trick.

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    • 24/12/2023 by Michael

      Hi Simon....Your initial symptons were similar to mine...I coughed going to the toilet and fell to the ground with a fractured rib...months later the cause was MM...Other than that I had no other symptons ..I went to the physio for muscle pain after a work out and he saw swelling from my mid rib area..I followed it up with an appointment with my GP..an ultra sound revealed a tumor smiling back at me!! What a shock...it was supposed to happen to other people not me...Further diagnosis MM...had to google it to find its meaning,,,MRI scan revealed lesions etc etc..the tumor dissolved after my initial chemo infusion..Pharmac have placed people with MM in a perilous position not funding life saving drugs...the sooner this is rectified the better..Keep well and thinking of you and your family...Mike