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Haley’s Metastatic breast cancer journey

  • We say goodbye to our darling Haley

      27 April 2024
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    On Friday 26th April at 10pm our beloved Haley passed away at Waipuna Hospice

    in the arms of her darling husband Tony and with her precious Mom Kathryn by her side and her sisters listening in and praying

    Words can’t describe how much we will miss Haley, the way she lit up every room with her big smile and infectious laugh, her cheeky banter and quick retort, her pure and infectious love of life, her ability to always say yes to adventure, her love for everyone around her and the compassion and empathy she showed us all. We are all better people for having known, loved and been loved by our ray of sunshine Haley.

    Our deepest condolences and love go out to Tony, Noah, Lauren, Rhys & Millie. Jeff & Kathryn, Abbey & Marnie and their families. Rose & Loren, Jeremy and their families at this time.

    A heartfelt thank you to everyone for your love and support, your prayers and memories that have given everyone strength over not just these past 2 weeks but since the beginning of this journey for Haley and Tony and their family. And to the team at Waipuna Hospice for their loving care of Haley and her family over these past weeks, they are angels.

    Fly high our darling girl, you fought the most extraordinary battle right until the last moments, rest now wrapped in the arms of Christ with love and light from all those who loved you both here on earth and in heaven.

    It’s not a goodbye dear Haley it’s a see you again soon x

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  • Haley sadly does not have long left

      12 April 2024

    Unfortunately we have received word that Haley does not have long left.

    We ask that you read the latest update here and if you wish to leave well wishes or get updates that you join the FB group linked to the new Givealittle.

    Any share, or amount would be appreciated as they navigate these next days, weeks, months x

    https://givealittle.co.nz/cause/helping-hands-for-haley-and-her-family

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  • Chemo and Metro Mapping protocol begins

      26 June 2023

    Since we left off Haley has been working tirelessly with a whole heap of treatments and specialized professionals in their fields to continue to kick this thing to the curb.

    Unfortunately at this time they are experiencing a bit of a hump in the road on this journey which means that the plan of attack has changed.

    Tomorrow Haley begins a course of chemo and has been working with an additional team of doctors/nutritionists through the Boyd Clinic in Auckland to prepare a Metro Mapping protocol for healing based on her genetic cancer type.

    This new plan comes at a cost, physical with the chemo and all that entails, but financial as none of the rest of the protocol is funded in NZ. Current indications are showing this to be around the $4000 per month mark. That’s just the medicines not the initial outlay of devising the plan, genetic testing and everything else that goes in to developing her own Metro Map to beat this cancer. Her initial consultation was $300 for 90 minutes and todays doctors consult was $190. So this is not cheap but this protocol is life saving and very much now what is required!

    Fighting this monster is expensive!!!!

    If funds right now are tight we would appreciate if you could take a moment to share Haley’s page on your socials as we all know that miracles can occur from random places.

    June funds are paid 20th July so we really would love to get this much needed money in ASAP even to cover the first month so there no treatment loss

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  • Prayers needed for this next chapter of the fight

      8 May 2023
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    In February Haley had her 3 monthly CT scan. Everything looked good apart from some a swollen lymph node on her sternum and 3 tumors on her lungs increased in size. The doctors were not overly concerned as this was likely swelling from when she had her mastectomy in December.

    In the end of February Haley got to spend some quality time with one of her best friends from Minnesota (Michele) and two other friends. They travelled all over the North and got to go on lots of adventures including, parasailing, dinner cruise, hiking (including up Mount Maunganui), visited waterfalls, swimming in the ocean, swimming in hot pools, Waitomo glow worm caves, zip lining, and a dolphin watching cruise.

    In March Haley went in for a routine blood test that came back abnormal. They repeated the blood tests again 2 weeks later and they came back as even more abnormal, so Haley was sent for an urgent CT scan. This CT scan was unfortunately bad news. They discovered her liver had developed innumerable tumors, some measuring 3cm in size. These tumors had grown within 8 weeks as the previous scan had no evidence of tumors in the liver. The oncologist told Haley the current treatment or hormonal therapy has stopped working and the next plan of action is for chemotherapy.

    After processing this information Haley and her family did a lot of praying and decided to hold off on chemo and intensify the alternative treatments she has been doing. Haley has been unable to do intravenous vitamin C and other treatments since August 2022 due to cost burden and difficulty with IV access; but remained on other less expensive forms of alternative therapies.

    When Haley was first diagnosed in 2021 there was a tumor on her liver and that went away when she was doing IV vitamin C. Haley will be getting a port-a-cath (also known as a port, it's an IV line that is inserted into a vein in the heart and can be easily accessed through the port; these can be in place for months even years). The port can be used to draw blood and any other procedures that will require IV access. With this Haley will be able to do more frequent IV vitamin C therapies and will make it easier to get bloods drawn.

    When they find the time Haley and her family enjoy getting respite at a family friendly resort called Regal Palms Resort in Rotorua. It's been a wonderful escape for Haley and Tony to get away; and also fun with the whole family creating memories.

    Haley has been advised by her medical team to stop working and focusing on family and healing. With this loss of income finances are especially tight. If you are able to help the Nienow's financially your donations will help Haley afford the alternative treatment costs as well as give them opportunity to have quality time at Regal Palms Resort or other family holidays. We ask that you continue to pray for Haley and her family. We pray that God heals Haley and He keeps her and everyone supporting her safe in His loving arms.

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  • Broken ankle and bye bye boobie

      22 December 2022
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    After discussion with the oncology and breast surgeon teams it was decided the best route would be to go forward with a single mastectomy. Haley's breast changes were happening quickly and they were worried the cancer might spread further or go to the other breast. The medication changes did not seem to be making any difference in cancer, so Haley made the decision to go forward with the mastectomy. The surgery was booked rather quickly as it was aggressive cancer every day counts.

    In typical Haley style, she could not make this a straightforward case. Three week before surgery Haley rolled her ankle walking down a steep hill and fractured her left ankle. This ankle was previously fractured in 2019 so was already weak, and the medications Haley is on deplete bone minerals making her at risk for fractures. Haley's medical team expanded now to include orthopedic doctors. Luckily they all worked together nicely and made it so there were no delays in having the mastectomy.

    The mastectomy was done on 2 Dec. So far the recovery is going as planned. There is are some minor side effects but at this point nothing too concerning and just watch and wait approach. The results from the breast mastectomy were reassuring that Haley made the right decision as the original tumor increased slightly to 22mm and the found cancer in the ducts. Luckily all was removed in time. So now that means the only cancer left is in the lungs and spine. We pray for a full healing and that Haley will go into remission.

    Her ankle is nearly fully healed, she's able to walk on it now but still has to wear a boot for one more week. The next step is going to physiotherapy and getting a strength program in place. She'll also need physiotherapy after the mastectomy to prevent any injury to her shoulder. Unfortunately this means more time off work for Haley.

    Haley is still doing alternative treatments however a permanent IV line (port a cath) may need to get put in as the medical team are having problems finding good veins for treatment, blood draws, and contrast for CT and MRI scans. This procedure isn't as invasive as the other's she's gone through. The decision will be made in February when her next CT scan is due. If they can't get an IV line for the CT contrast or get good blood draws then that will have to be the next step.

    Tony and Haley have been coping with the help of all their friends, church and community; and their friends and family in the States who continue support through prayer and facebook chats. They are thankful for the friends who have stayed overnight and watched their kids so they could have some date nights. Haley and Tony are hoping they can bring their family for a visit to the States this May to see Tony's son, Noah, graduate from high school, and to catch up with friends and family.

    Any donations towards Haley and her family are greatly appreciated. They are used to continue to fund Haley's alternative treatment and they would like to try save money so they can make it to America. It's been 4 years since they've seen their family (apart from Haley's mum who came out last year thanks to the help of all of you).

    Christmas is just a few days away. May you all have a very Merry Christmas and a wonderful New Year.

    God Bless

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