Burglary

Adam from Central Whangarei

Dear thieves,

I know you won't see this. However, I would very much like all your neighbours to know (and to warn) just how unappreciative my wife, son, and I are of you and your pals breaking into our garage and house while we were at the last Women's World Cup Rugby match up here in Whangārei.
My biggest gripe with you though is why you even thought it necessary? I'm sure had you actually known how much we struggle then you may have changed your mind....But that's hindsight eh.

You see, I'm the primary caregiver of my wife Katie who has an extremely rare blood cancer that has robbed her mobility and a raft of other issues called The Castleman's Variety of POEMS Syndrome - We may need to go get a Stem Cell Transplant shortly. It all started basically a few weeks after giving birth to our nearly 5yr old son, Niam. What she thought was a neck strain (obvious conclusion) turned out to be far more ominous.

Had biopsies done of the swollen lymph nodes in her neck throughout 2018, only to be told it would go away as it was just reacting to something. Come Christmas 2018, her feet starting weakening. So this, combined with the still swollen lymph nodes/pain made alarm bells ring. Emergency scans and meetings occurred quickly and they decided to rush her down to Auckland City Hospital for a Spinal Fusion connecting the base of her skull to C3, C4, and C5 vertebrate, as a tumour had eaten away at the top two (C1-2), and surrounded her spinal column. Given all the symptoms, but before the scans/operation, they did an original misdiagnosis of Guillain Barre Syndrome (for the Polyneuropathy of her feet/legs). They promptly realised this actually wasn't the case and gave her the current diagnosis - Castlemans = a rare disease - POEMS = even rarer.

Once the operation happened, then 75 rounds of radiation occurred on the main tumor, but also 3 more more non cancerous bony lesions/tumors on her spine. Following this, the chemo began (will be on it every day til....well you know). However, the chemo wasn't straight forward as the way the funding works meant she had to take a different one beforehand that was known to be risky and could cause an increase in Polyneuropathy symptoms, before moving to the current chemo, Lenalidomide. Did it increase? yes.

To make make matters all the more stressful, Katie wasn't a resident at the very beginning so WINZ was impossible. Thankfully kind hearts prevailed and the hospitals proceeded without charging us any more (treated her as a Kiwi - while the application was being processed). Until that point we'd already received a $10k bill for her staying in Whangārei hospital for 3 days while they did nothing but think/discharge her.

I had to quit work when it all began. So that was serious problem financially. Especially when WINZ weren't able to be be as helpful yet due to her immigration status. So....we had to file for a No Asset Procedure......Yay.
All this not 3 years into our marriage.
Niam learnt to walk at the Auckland Hospital.

.........

What's life like these days? Well, financially we're obviously still at the bottom of the cliff proverbially speaking. Emotionally? Stressed. Physically? Exhausted.
Chemo is ongoing....and there's a chance that the Kind-of remission she was in may be about to stop...in which case back to Auckland....but we'll find out soon.

For the past year I've been studying Environmental Science down at Northtec - my passion.....because if it's financially unviable (We tested it out) for me to work fulltime at the moment (Supported Living Payment - Broke Boredom) then I may as well study what I Love.....

Fast forward to your actions. Do you know just how much stress and suffering you've inflicted? We're not rich. We get by. That's it.
We can't afford contents insurance.....SLP doesn't allow such wiggle room.
To make matters worse my mind decided to have another mental break/flipout (had a previous one in 2020, 1 year after her diagnosis). Most likely a Brief Psychotic Disorder (stress - childhood trauma).....not helpful when I'm meant to be the caregiver.

........

Anyway, that's the brief history of us.
You stole from us. And that sucks.
Why steal from the broken and poor?
The rich? Well the rich are by definition rich.......and we're just more poor than we were before.
Would be a miracle if we could ever get a house of our own that meets Katie's mobility needs....but til that unlikely day, we'll keep being poor.

If you could (you definitely can) contribute to the suffering caused, well then your more that welcome to donate to the givealittle a friend set up for us.....It's not much....but it'll help replace some of it.


Regards,

Adam J Hughes

givealittle.co.nz...






*Update - Katies paraprotein levels have elevated the last few blood tests, and the PET scan she had a couple weeks back shows a new tumour on her spine at C7. She's now on wait list for a stem cell transplant, though we'll have a more concrete plan by the end of February.