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Help our mum Shirley on her journey to fight a rare Cholangiocarcinoma

  • Update 7 - A Week of Ups and Downs

      1 June 2025

    Kia ora koutou,

    In our last update, we shared that Mum was in hospital again with a chemo-related infection. We saw the signs early this time, and she was admitted into Kawakawa hospital on Thursday 22nd May and was discharged the following Sunday with oral antibiotics. Unfortunately, on Monday morning (26th), she woke with pain in her gallbladder area and another fever.

    That same day, she was scheduled to have her liquid biopsy — a key test that will help us better understand the genetic makeup of her tumour - thanks to this page, this test was an option for mum (given it was $5k). This could potentially open doors to targeted treatments or clinical trials down the line. Despite feeling unwell, she went ahead with the test, then headed straight to the Emergency Department at Whangārei Hospital.

    She spent most of the week there on IV antibiotics, and the team has since confirmed that the infection is related to her biliary stent. It's something we’ll need to monitor closely and they are looking at options, given its so important it works to stop the bile build up. Mum was discharged on Thursday, and she’s now recovering with oral antibiotics at home.

    With everything going on, Elli has extended his stay to help support Mum and Dad.

    We continue to take things one day at a time. Thank you again for walking alongside us.

    Arohanui,

    Shirley’s whānau

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  • Update 6: Whānau, A Spa on the Deck, and a Few Unexpected Turns

      25 May 2025

    Kia ora whānau,

    While Mum’s treatment continues, life at home has brought some special moments — and a few unexpected twists.

    This past week, Wetini and Elli returned from Australia, wrapping their arms around their mum the best way they know how — by getting stuck into some serious mahi around the homestead. With the help of her nephew Jase, they’ve cleared access paths and started building a new front deck to help fulfil one of Mum’s bucket list dreams: installing a spa on the porch.

    She’s imagined sitting out there, soaking, and watching the sun set over Waikare. It’s something small and beautiful to look forward to — and we’re determined to make it happen.

    Around the same time, though, Dad (Joe) had a nasty fall from the quad bike and broke his collarbone. It’s knocked him off his feet and made the logistics of appointments, cooking, and everyday life harder. We’ve pulled together as a whānau, but it’s fair to say we’ve had our hands full.

    And just as we were finding some rhythm again, Mum started experiencing more pain and a rising temperature. We’ve since had to take her back into hospital with what looks like another chemo-related infection. It’s frustrating and hard — but she’s in good hands, and we’re hopeful it was caught early.

    Even amidst all this, Mum’s spirit is still strong. The humour still shows up in little moments. And the kindness coming from all of you continues to buoy us.

    Thank you for standing with her, and with us.

    Arohanui,

    Shirley’s whānau

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  • Update 5 - Shirley’s Medical Journey & What Comes Next

      25 May 2025

    Kia ora koutou,

    We’re incredibly grateful for the ongoing support we’ve received from whānau, friends, and generous strangers. Today’s update focuses on Mum’s treatment journey and the road ahead.

    Not long after her second round of chemotherapy, Mum became unwell and was admitted to hospital and diagnosed with neutropenic sepsis, a serious infection that can occur when chemotherapy weakens the immune system. The infection was linked to cholecystitis (inflammation of the gallbladder) and required urgent IV antibiotics and a week of hospital care - thankfully she recovered well and made it home again.

    Soon after, she met with Dr Edmond Ang, a private oncologist, to explore treatment options outside the public system. These included:

    - Immunotherapy – particularly Durvalumab and Pembrolizumab, which offer survival benefits for a small number of patients with her rare cancer.

    - Liquid biopsy – a genomic blood test that may reveal treatment paths or clinical trial options down the line.

    These options offer hope — but come with considerable cost:

    - Liquid biopsy test: $4,517 NZD

    - Durvalumab immunotherapy for a year: $99,194 NZD

    Access to these treatments gives Mum choices — to act if the opportunity arises. Your donations help remove barriers to those decisions, and we’re so thankful.

    We’ll continue to keep you updated as her treatment progresses. Your support is helping Mum stay prepared, hopeful, and surrounded by care.

    Ngā mihi nui,

    Shirley’s whānau

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  • The Next Step — And Why We’re Fundraising

      14 May 2025

    Mum has now been referred to a private oncologist, Dr Edmond Ang, to explore treatment options that aren’t available in the public system. These include next-generation genomic testing (which could reveal mutations in her cancer that might be treated with targeted drugs), and immunotherapy, specifically durvalumab, which has shown promise in international trials but isn’t funded for her type of cancer in New Zealand.

    The challenge is that these options are expensive, and they need to happen quickly while her body is still responding. Mum doesn’t have private insurance, so everything from oncology appointments, repeat biopsies, blood testing, imaging, to the medication (immunotherapy) itself would need to be self-funded.

    We know our goal of raising $60,000 is a lot, and this is only to cover the immunotherapy, not her full treatment…. The funds practically mean access to the treatments that could give her more time with us, more good days, and more chances to do the things she loves with the people she loves.

    We hope these updates have provided a little more insight into mum’s journey this year, we will update again soon on mums’ recent medical appointments.

    Thank you, from the bottom of our hearts, for walking alongside us. This journey has been heavy at times, but we’ve never felt alone.

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  • Update 3: Starting treatment

      14 May 2025

    After recovering from the procedures, in early March Mum met with her oncology team at Whangarei hospital to talk about her options. Because her cancer was advanced and couldn’t be operated on, the focus turned to palliative chemotherapy, not to “give up,” but to buy time, improve quality of life, and see how her body would respond. This meeting we all joined (via video call from Australia), to learn more about the path forward. The research we had done, showed the base level of chemotherapy could be done in New Zealand, however the world standard in attacking this type of cancer also included an immunotherapy drug called durvalumab, while funded in most countries, is not in New Zealand. This meant mum needed to make a decision on where to from there. Stay in New Zealand or come to Australia.

    Her main focus was to get started. She began chemotherapy in late March, a combination of cisplatin and gemcitabine and, to everyone’s relief, she responded well. After the first cycle, her pain lessened. Her energy returned. Her CA 19-9 tumour marker, which had started at 148, dropped significantly to 35. And a CT scan after the first cycle, in April showed clearer tumour borders, reduced swelling in the lymph nodes, and no signs of further spread.

    Mum told us she felt better than she had in months. That glimmer of progress opened a new window, one her oncologist is now eager to explore further.

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  • Update 2: How mum's journey began

      14 May 2025

    Back in late December and early January, Mum began feeling unwell — tired, in pain, struggling to eat, and losing weight. She just wasn’t herself. On January 10th, a routine GP visit turned serious when her doctor called that afternoon with news no one wants to hear: her liver function was severely abnormal, and she needed to get to Whangarei Hospital Emergency Department immediately.

    At the hospital, a CT scan revealed a mass in a complex area known as the porta hepatis, where major blood vessels and bile ducts converge. Another mass was found near the gallbladder neck. Blood tests showed elevated tumour markers, and an MRCP confirmed a blockage in her bile duct — explaining the fatigue and jaundice that had set in.

    After stabilising her, Mum was sent home to wait for further testing at North Shore Hospital. A few weeks later, in late January, she underwent a PET-CT scan. This showed the tumour was wrapped around her hepatic artery and portal vein — critical structures that meant surgery and radiotherapy weren’t options. The scan also picked up enlarged lymph nodes and hazy spots suggesting early peritoneal spread.

    From there, everything moved quickly. Mum was re-admitted as her jaundice worsened. She had a procedure to drain the bile from her liver, followed by a stent to keep the duct open, a turning point that brought real relief. A biopsy taken at the same time confirmed what we feared: extrahepatic cholangiocarcinoma, a rare and difficult-to-treat bile duct cancer.

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  • Update 1: A Deeper Update on mums Journey

      14 May 2025

    Tēnā koutou katoa,

    First and foremost, thank you. Every donation, message, and share to-date has meant more than we can express. The kindness shown to our whānau since launching this page has wrapped around us like a korowai — protective, comforting, and humbling. We’re so grateful. While it frustrates us that in this day and age, we are having to ask for koha to help mum have a chance, sadly the NZ health system is limited. Everyone’s generosity is hugely appreciated; it will make a real difference.

    We wanted to share a fuller update with those of you who have supported Mum, to help you understand just how much she’s been through, and why your awhi means the world right now.

    Unfortunately, our wordcount is capped, so we will do this over a few updates:

    1. How her illness started

    2. Starting treatment

    3. Next steps

    Please reach out, your support is welcomed!

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