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Support Rae’s cancer treatment

  • Update from Gregg and the family around donations/funds to the page for Rae.

      25 February 2025
    Posted by: Givealittle

    Thank you again to everyone who contributed. I can't tell you how comforting it was to Rae (z"l) to know she could start the Enhertu treatment, and she was so excited to get the first infusion. None of us could have imagined she would be gone a few days later.

    We initially raised this money for the Enhertu, which is no longer needed. The funds will now be used first for Rae's initial treatment, then the cost of her funeral, and anything remaining donated to Mary Potter Hospice. The hospice looked after Rae's community needs for five years and took care of her in her final hours. Rae was initially horrified by the term "hospice" but soon recognised how supportive they were and was comforted knowing they were there, day or night. When the hospital asked Rae where she'd like to spend her final days, she did not hesitate: "Hospice."

    However I have spoken to Givealittle and if you would like your donation to instead be refunded back to you, they will help you with this process. You'll need to contact them by 4th March to request this.

    Thank you again from the bottom of my heart. I knew Rae was loved by the community, but I could not have imagined how much. That has been a real comfort to me and the kids as we've navigated life without our beloved Rae.

    -Gregg

    ****As per Gregg's message above, if donors would like a refund of their donation or have any questions around this, please contact Givealittle at helpdesk@givealittle.co.nz by 5pm 4th March.****

      1 comment  |  Login to leave a comment

    • 25/02/2025 by Sally

      Dear Gregg - I’m very happy to have my donation kept by you for whatever you need it for and any residual to be donated. Here for you and the family anytime. Wishing you long life - Sally C

  • Rae has passed away

      19 February 2025
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    I am very sorry to report that Rae developed an intestinal blockage from the lesions around her abdomen, and it was less than three days between diagnosis and death. She leaves behind three beautiful young adults and one devastated husband.

    Rae's funeral will be Thursday at 10am NZDT at Makara cemetery. This will be live-streamed at https://lychgate.co.nz/upcoming-funerals/

    In lieu of flowers, please consider a donation to the Mary Potter Hospice in Rae's memory. https://marypotter.org.nz/support-us/donations/

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  • Day One

      13 February 2025
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    It's been a rough week: On Tuesday Rae was back in hospital to get the radiation therapy for the tumour pressing against her rib, and while she was there they did another "abdomen tap" and drained off another 5 litres of fluid. It built up much faster than expected, which is a bad sign, but the solution is still the same: Hope the Enhertu stops the growth, which will reduce the fluid buildup.

    Today did not start well: Rae was nauseous and very weak. Her body temperature was 32C (90F), her heart rate was high and her blood pressure was very low. We were on the phone with the nurse to decide if we were going to the emergency department (again!) or carry on with treatment. She was keen to start treatment and gave Rae fluids when she arrived, which helped. As I type this, Rae's halfway through her first of (hopefully) many infusions. The side effects should be much more manageable than the chemo treatments, and her hair has already started to grow back. (We've got a pool for what colour it will be. Last time it could best be described as "calico.")

    Again, the outpouring of support has been overwhelming, and we are so grateful. I could never have imagined us getting to this point, and even as we deal with these new developments and side effects, I can't help but feel optimistic. If you haven't heard from Rae yet, you will as soon as she starts to feel better. x

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    • 13/02/2025 by Sally

      Thinking of you, lots of love, dear Rae. Love Sally xx

  • Back in hospital

      6 February 2025
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    After ten days of no improvement, Rae agreed to go back to hospital and they drained *5.5 litres* of fluid off her abdomen! She's feeling much better (obviously!) and is eating again, so hopefully she'll start building her strength back up. It's amazing what a month of being unable to move will do to your body.

    The palliative team think she needs to increase her fentanyl dose. When she moved from 6.25 microgram patch to the 25 microgram patch, it seemed like a massive step, but the oncologist told her today she's still on "baby doses." They've kept her in hospital a few extra days to get an idea of what he background pain levels are now.

    Tomorrow (Friday) we meet with the private oncologist to discuss the Enhertu regime and confirm the cost. The estimate we got a week ago:

    - The drug itself is slightly less than we expected; it is capped at NZ $72,000 - effectively, we pay for six doses and the manufacturer covers the rest, for however long it continues to be effective.

    - The IV administration is twice as much as we thought, NZ $3000 per cycle. If Rae was on it for a year, that's NZ $51,000.

    The combined total is NZ $123,000 (US $70,000 or £56,000). We'll confirm that tomorrow. It's an astronomical sum, but less than half of what it would have cost just a few months ago.

    The response to the Givealittle page has been extraordinary, thank you. As soon as Rae is out of hospital and feeling better, I will update her.

      2 comments  |  Login to leave a comment

    • 07/02/2025 by Eileen

      So sorry to learn that you’re in hospital- thinking of you and sending love xxxx

    • 16/02/2025 by Navina

      Thank you for keeping us updated, and also for the photo of Rae out of bed holding flowers, lovely!