Help Simon fight his Cancer for his Kids

$173,821 of $300,000 goal
Given by 2288 generous donors in around 8 months

Please help Simon keep fighting to see his kids grow older, and for them to bank lots of memories with their loved Dad (and husband)!

Te Atatu Peninsula, Auckland

Hi, we are the Clark Whanau, Simon, Libby and our four kids Ethan (15), Jacob and Liam (5) and Eleanor (4). After becoming very sick Christmas 2021 we were shocked when Simon had a diagnosis of Multiple Myeloma. He started chemotherapy immediately and testing reveals he has a gene mutation which means his cancer is aggressive. 2022 saw him undergo chemo and not one but two gruelling bone marrow transplants 100 days apart. Simon is a fighter for his kids and did an amazing job tolerating the transplants.

Unfortunately in March 23 we received the news that the transplants were unsuccessful. He was put on more chemo (lenolidomide) which has done a good job keeping the cancer at bay.

In August, the bloods showed the myeloma is on the move again which means we need to move to unfunded drugs. Pomalidomide is our first stop and costs $700 a month. The next stop after that will be Daratumumab which will cost $220k for the first year. (Please see update from April 2024)

We have dropped to extremely limited income and mortgage payment increase and cost of basic living means we are reaching out in the hope that we may be able to raise some money to put towards treatments costs of these two drugs and some day to day expenses.

*update as of April 2024*

Our funds raised will now be going towards CarT therapy in China! Please see our update for more info!❤️❤️

Any donations are appreciated more than you know. Thank you for reading.

Use of funds

We set up this page specifically to pay for two drugs - pomalidomide and daratumumab and as at April 2024 we have spent $50k on those drugs. Simon is currently on a trial and will be until it ends or until he doesn’t respond to the drug – whichever comes first. After that, we will use the givealittle funds for CAR-T Treatment in China and from time to time, we may use funds if we’re short for day-to-day bills.

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Latest update

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

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Latest donations

April
April 46 mins ago
You can do it!
$10
B
B 47 mins ago
$2
Courtney
Courtney 1 day ago
$5
Neeve
Neeve 2 days ago
$3
Simon and Libby Clark

Thanks heaps Neeve x

Simon and Libby Clark
Catherine
Catherine 2 days ago
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Simon and Libby Clark

Thank you Catherine x

Simon and Libby Clark

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This campaign started on 18 Sep 2023 and ends on 30 Apr 2025.