KC Martin-Stone: Project Bounce Back

26 January 2024:

I thought I should give you an update on Mum's situation, as so much has changed since my original post (below). It's bittersweet to see how optimistic we were back in April 2022, compared to how challenging the reality has been.

The good news is that we're closer than we've ever been to understanding the complexity of Mum's medical conditions, and there's still a lot of hope for treatment and recovery.

Back in April 2022, we asked supporters to help us reach a target of $55,000 to help Mum get through what we thought might be 6 months to get back on her feet. We've raised over $50K in the 21 months since then, and I can't tell you how grateful we are for how that support has enabled Mum to weather the enormous challenges she's faced.

2023 was the most challenging year yet. There were many barriers to accessing medical care. Mum's condition deteriorated, including losing about a quarter of her bodyweight without explanation, and a worsening of the acute neurological events. She also needed to be in Melbourne for the entire year, as her doctors confirmed that her condition was too complex to be managed in Darwin.

There were a couple of wins along the way. Mum's banks waived her debts on hardship grounds, which eased some of the financial pressure. And in December, she had 8 days in hospital to undergo more tests.

The complexity of her condition is hard to summarise in 25 words or less, but to update what we knew in the original post:

Overall, the good days are getting a bit better, and the bad days are getting a bit worse. It's still hard to predict and manage, but she's working hard to understand it all and manage it as best she can on a day to day basis.

Her medical team are finally making good progress on understanding the CSF leak situation, and investigations into the weight loss problem are scheduled for early next month. We haven't made any progress on the lymphatic dysfunction, but we are hopeful that she may be able to access the relevant specialists in the near future.

However, all of this comes with additional expense. Mum's financial situation is that right now she is reliant on JobSeeker, which pays $770 per fortnight. That's not enough to cover living expenses, let alone the additional costs of all the medical care she needs.

She has had a month back in Darwin over xmas, recuperating and rebuilding her strength for the fight ahead. We want to make 2024 the year she gets back on her feet, back into secure housing, and back to work. She's not ready to give up yet, but she needs support to get through.

This is where you can help. We're acutely aware of the cost of living crisis, and how tough times are for everyone. Even if you aren't able to donate right now, we'd really appreciate it if you took a moment to share the GoFundMe with your friends and family.

And if you can show your support with a donation, please be assured that we are really good at stretching dollars as far as they can possibly go! All of it will be put towards ensuring Mum has her living and medical costs covered.

As previously, if there are any excess funds, they will be paid forward to the Brain Foundation and the Brave Foundation so they can continue their excellent work.

We've updated the goal amount to reflect what we think it will take to help Mum through the foreseeable challenges over the next year. Maybe we're being optimistic again, but we don't want to ask for too much.

Mum asked me to pass on her enormous thanks for the kindness, generosity and numerous well wishes she has received along the way. I know it's incredibly hard for her to ask for help, and not be as independent as she always was. She doesn't always ask for the help she needs, and sometimes chooses to go without, in order to avoid having to ask. I do what I can, when I can - but it won't surprise anyone to hear that sometimes she's too independent for her own good!

I'll add my huge thanks to hers, because it helps me so much to know that she is surrounded by such wonderful people. You've brightened some very dark times, and I can't thank you enough for that. Any help you can give now to assist Mum through the next challenges makes a huge difference to us.

Many thanks,

Phoebe

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19 April 2022:

For those of you who don't know my mum, she's pretty impressive. Her name's Karen Martin-Stone, aka KC. She had me when she was 16 and single, and went on to build a career in archaeology and comedy while raising me to adulthood.

 

 

For the last four years, Mum's been living with a constant migraine (official diagnosis: severe migraine with neurological manifestations). But recently she found out it was more than that.

 

Her migraine hasn't stabilised at all over the four years, and over the last six months it got worse. She's been having lots of tests, as it looks like her neurological symptoms have been caused by a leak of cerebrospinal (CSF) fluid in her spine. She had a trampolining accident that injured her spine the day before her symptoms started in January 2018, but nobody joined the dots to figure it out.

 

Spinal CSF leaks are pretty uncommon and frequently missed by doctors. They also don't always show up on the tests. So Mum was having quite a few different tests, and on one of these they found a tumour in her pituitary gland, at the base of her brain. She's also started leaking fluid out her ears, which her doctors think is probably a cranial CSF leak.

 

For the last month, Mum has been randomly losing consciousness and losing the use of her right arm. This is new, on top of all her other symptoms that affect her speech, cognitive function, vision, sleep, language, muscles, etc. Losing consciousness has raised the seriousness of her condition, because it means it's potentially life-threatening. 

Her doctors in Darwin have confirmed she urgently needs help interstate. So we're figuring out how to organise and pay for all that. 

 

 

Mum has been struggling to work in her archaeology and comedy businesses for the four years she's been sick, but she's muddled through, managing to get by on less than half of her usual income - that's the kind of person she is. She hates to ask for help, and has always been super independent! But now she can't work at all and, because of the deterioration of her condition, it's not even safe for her to live alone.

 

I've moved in to care for her, and she's working with her doctors to access the tests and care she needs. Looking for the spinal CSF leak has taken a back seat to figuring out the situation with her pituitary tumour, and finding the cranial CSF leak.

 

 

Living in Darwin means that we're thousands of kilometres away from the kind of specialists and medical care that Mum needs. She needs to go to Melbourne, to be treated by specialists who see pituitary tumours and CSF leaks regularly. At the moment, there are delays to accessing care interstate due to the impact of the latest Covid wave on the hospital system. In the meantime, Mum's working with doctors here who have never done the kinds of test she needs, to learn how to do them and collaborate between the hospitals and private companies here to access vital equipment.

 

So how can you help?

 

All of the tests, doctor appointments, travel and the time off work cost money that Mum, unfortunately, doesn't have. Over the four years she's been sick, she's burned through her savings and taken on debt to survive. She has relied on a small disability insurance policy, which doesn't cover all of her usual costs of living, let alone the extra medical expenses. And those payments will run out soon.

 

This is where you come in! Any support you can give to this GoFundMe campaign will go directly to helping Mum cover her medical and living expenses.

 

We've set the goal at $55,000 because this is the equivalent of six months' worth of her pre-illness income. It's hard to know how much her medical expenses will be because it will partly depend on whether she will be treated as an outpatient or admitted to hospital. It will also depend on what type of tumour it is, and whether she needs ongoing radiation or chemotherapy treatment for it.

 

We know that refining the diagnoses will take time and involve travelling to access medical care. And treatment and recovery will take more time on top of that. How much time? We don't know.

 

We will use the GoFundMe funds to pay for travel for Mum and myself to Melbourne - she'll need me to help her there, the same way I help her here. We'll also use the funds to cover the medical expenses and living costs, including paying down the credit card debt she took on to get by. In our regular updates, we'll let you know what the money has covered - it's important to us that you know your contribution will be spent wisely. 

In the best case scenario, these funds would give Mum six months to get back on her feet. Depending on how much everything costs, it might not stretch that far. But we're pretty good at stretching dollars as far as they can go! 

 

If there are any funds left over by the time Mum gets back to work, she plans to donate them in equal share to the Brain Foundation and the Brave Foundation . The Brain Foundation does important research into brain diseases, and the Brave Foundation supports teenagers who are parents so that they can go on to build amazing lives - like Mum did for herself and me.

 

 

We know that times are tough for lots of people right now, so we totally understand if you can't stretch to a financial donation. Please share it with your networks, and encourage them to donate and share.

 

Thanks for reading my Mum's story! We'll post updates to let you know how she's going. Wish us luck!

 

Phoebe