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Help Simon fight his Cancer for his Kids

  • 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.

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    • 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.

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    • 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...

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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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  • 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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