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Jesse's story

  • Jesse is home

      18 May 2019

    Jesse is back home from Australia after a month of very intense treatments. She has to wait at least 3 weeks before getting a CT scan and blood tests to assess the effects. In theory the hyperthermia will have caused the lung tumours to swell temporarily, so it’s necessary to wait until that settles down. Jess is very tired, but hopefully that is due to the treatment. Her family is, of course, delighted to have her back home.

    Last year, after submitting a complaint to the Health and Disability Commissioner they responded stating that Jesse’s late diagnosis was due to medical misadventure. She was advised to submit a claim to ACC. After months and months of frustrating communication and assessments ACC has written to her to inform her that they will cover ongoing costs e.g. childcare and cleaning . Some of these costs will be backdated. Because of this Jesse and Karl have decided to put the Givealittle fundraising on hold and have asked me (Jesse’s mother, Diane) to say how very very grateful they are for your amazingly generous support which enabled this month of treatment in Australia. Also the cost of the drug TBL12.

    I will post updates of Jesse’s progress on her private Facebook page https://www.facebook.com/groups/1662629620651854/

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  • Gold Coast Update

      5 May 2019

    Jesse has completed her third week of treatment involving hyperthermia and IV nutrition at the Gold Coast’s NIIM clinic. I (Jesse’s mum, Diane) joined her last week to be with her during what have been quite challenging treatments. As a nurse told her, the hyperthermia really is like being locked in a portaloo in the desert. It’s lovely to be able to stay with my sister, Meg, who lives in the area.

    On my first day with Jesse, I opened a pamphlet about the clinic. To my surprise, the founder of the clinic is an old friend from my nursing days in the late 60’s. Professor Avni Sali is a respected expert in integrative medicine. (Integrative medicine combines both evidence-based conventional medicine and complementary medicine.) The NIIM institute is a not-for-profit charitable organisation, and funds are reinvested into research activities and development. Jesse finished the week’s treatments on Thursday but was feeling very tired and developed a migraine type headache with a visual disturbance similar to looking into a kaleidoscope. As she’s never had this before, we decided to go to the emergency department at a nearby hospital. They did a CT scan that showed “a very small suspicious area” in right side of her brain. As many of you will know, however, CT scans can give false readings. They planned to do an MRI but for various reasons couldn’t do this. After a predictably awful night spent in emergency, another CT scan using contrast was recommended. This would have given a clearer picture, but Jesse decided to wait until she’s home in New Zealand before subjecting her body to more radiation.

    So now there is one more week of treatment before she can go home. It’s early days yet for us to ascertain the effectiveness of the program, but we are very grateful to all of you for your very generous support and will continue to give updates. Jesse is continuing to be her amazingly positive self. She is an inspiration to us all.

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  • A possible option

      3 May 2019

    If you have been considering seeking financial advice, this could be an option. Glen Bremner, a senior financial adviser with HAVEN, has offered the following....

    "Help us raise funds for a great cause. Book a free, no obligation financial review with Glen from Haven Financial Advisers and he will donate $100 for Jesse's treatment on your behalf. Glen can review your insurances, Kiwisaver and mortgage to make sure that you're getting the best deal for your situation. The review is completely free with no obligation to change. You'll get professional advice, without the price tag. Glen can meet you at your convenience, just click the link below to pop in your details and he will be in touch."

    https://haven.co.nz/haven-adviser-glen-bremner/

    We're very grateful for Glen's kind offer and I know people who have used Glen's services. They have been very satisfied. Diane.

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  • Thank you

      28 March 2019

    Thank you so much for the amazing response. We have reached the goal of $16,000 to cover the costs of Jesse's treatment in Australia for 4 weeks. There are, lots of ongoing costs. Some, we were unaware of, such as doctors consultation fees during the treatment so please keep sharing this page.

    It's difficult not to sound cliche but thank you again -people's generosity is just so humbling. Aroha nui Diane and family

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  • Jesse's treatment in Australia

      25 March 2019

    Thank you very very much to everyone for your ongoing love and support to Jesse. It’s really hard to keep asking for support but we have to believe that Jesse is going to stay with us for a very long time so I will keep asking.

    Her treatment in Australia starts on 15th April. Luckily she can stay with her aunty Meg so there will be no cost for accommodation. The actual treatment is $4000 a week. Jess continues to take the TBL12 drug which is also expensive – $1,400 month. So we have 3 weeks of treatment covered, but still need just under another $4000.

    We would really appreciate you sharing this page – it really helps.

    I can’t say thank you enough for your generosity

    Diane

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  • Jesse's treatment in Australia

      18 March 2019

    Thank you so much to all of you who have generously donated to Jesse’s givealittle. We have raised nearly 3 weeks of treatment – just one week to go. Jesse has been given dates for her visit to the clinic in Queensland and she starts treatment on 15th April. We are planning the logistics for child care. If anyone could help over the 2 weeks of the school holidays 15th – 26 April that would be great. Give Jess a ring if you can help. Thanks again for your wonderful support.

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  • Good news and not so good news

      1 March 2019

    Jesse had CT scan on Wed.Very nerve wracking waiting for results. Results show increase in size of lesions in both lungs but no spread to other parts of the body. Jesse continues to take the TBL12 drug.

    The generous donations given through givealittle are already enough to cover costs of 2 weeks of the 'Whole Body Hyperthermia' and IV nutrition' treatment in Queensland. Four weeks is recommended for the overall treatment.

    Thank you, thank you to everyone who has supported Jesse

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  • WOW Thank you

      24 February 2019
    Main image

    Thank you so, so much. In just under a week your generosity has raised 2 weeks of Jesse's upcoming treatment. We are so grateful for your loving support

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  • Another option for Jesse

      18 February 2019

    A detailed description of the events that affected Jesse and her family is outlined in previous posts but to summarise - in May 2018 she was diagnosed with metastatic breast cancer in both her lungs and given a prognosis of "maybe 5 years". She had a course of chemotherapy which did not stabilise or slow the growth of the tumours and the side effects made her life miserable and unable to leave the house. She started taking an unfunded drug, TBL12, enabled by generous donations via givealittle. Thank you so much to all of you who donated to Jess and her family-emotionally and materially. We are very, very grateful.

    As yet we don’t know if the TBL12 is having an effect, but her blood markers have increased which isn’t a great sign. Jesse is keen to try any treatment that has been shown effective with women in the same position. She spoke to a women who was in an even worse condition who attended a clinic on the Gold Coast. She received ‘Whole body hyperthermia’ and IV nutrition and was given the amazing result of clear scans. No evidence of disease. This is very inspiring and Jesse has spoken to the clinic who have given her the rundown of how it works. She would need to attend every second week day for one month and then given a break to reassess. Luckily she can stay with family there but the treatment itself will cost $4000 per week.

    Obviously this is a huge decision as she will have to leave family (Karl and the kids) in NZ.

    Please know we are not asking for any more financial support from all of you generous people who have donated already, but we would be very grateful if you share the page in any way you can.

    Thank you all again for helping us try and heal Jesse and keep her with us.

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  • Thank you to anonymous donors

      4 December 2018

    A few people have donated anonymously to Jesse's givealittle fund so I'm not able to thank them personally. Please know how grateful we are for your kindness

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  • Jesse update

      26 November 2018

    Jesse update.

    After the last round of Pertuzumal and Herceptin Jess had terrible ongoing side effects which effectively made it very difficult to leave the house. A chest xray showed that the tumours in her lungs had enlarged. After a very challenging time Jess decided to stop chemo and continue with the TBL12. She met with the guy who manufactures the TBL12 and he says that it takes 3 -6 months to have effect. She had Catscan last week and it confirmed that tumours in lungs larger but there is no sign of cancer anywhere else in her body.

    Jesse has asked that when you think of her please send positive thoughts. When you think of her (and you aren’t on the train or in a meeting) say out loud “Jesse will get better” or whatever words feel right for you!

    So once again thank you everyone who has generously donated. We really appreciate your kindness. TBL12 is expensive as are all the other therapies Jesse is using – romi romi massage, acupuncture etc. etc.

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