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Mum and Dad both diagnosed with Stage 4 (terminal) lung cancer (non-smokers)

  • Graham's presentation to a Parliamentary Cocktail function

      6 December 2022

    Graham was invited by Andrew Little, Minister of Health, to give a presentation to a Parliamentary Cocktail Function on the 16th of November. The purpose of the function was to highlight the challenges faced by lung cancer patients in New Zealand. Members of Parliament and representatives from Pharmac, media, pharmaceutical companies were in attendance as well as lung cancer patients and ambassadors. Graham was one of two lung cancer patient ambassadors to speak at the function.

    Below is the text of Graham's presentation:

    My name is Graham Brooke-Smith, at the beginning of this year in January I was diagnosed with Lung Cancer Stage 4, never smoked. It was identified when I had lower back pain otherwise, I felt just fine. Went to the doctor and did an x-ray, that’s the moment my life changed. I had a wife and 2 children a mortgage, by all accounts a good life. As you know once the cancer leaves its place of origin and extends to another part of your body; essentially the doctors consider you terminal.

    Why wasn’t it picked up sooner before it got to this stage?

    I was informed that without treatment I would have 6 months, with a targeted cancer fighting pill Osimertinib 1st generation, I would have 2-3 years. The doctors were confident the Osimertinib 3rd generation I would have 4 plus years. I liked the plus part of that number. But there’s a catch, the 1st generation pill is funded by Pharmac, but the 3rd generation pill, which is far better with longer life expectancy and fewer and less severe side effects, is not funded by Pharmac. So I needed to find $11,000 every month. You choose.

    What would you do? Live for 2-3 years with side effects or pay? Are you rich enough to have that sort of money?

    Five months later in May this year I was on the 3rd generation pill because the New Zealand public funded my Give-a-Little campaign and paid for my treatment. Saved my life, bought me more time with my children. Children who need their father. But….. then my wife Mery had lower back pain too, she had an x-ray, Mery too was diagnosed with Stage 4 lung cancer. Never smoked. Here we go again just 5 months apart. We lived healthy lives as Mery was really into organic food and eating well and very much conscientious towards living healthy lives especial regarding our 2 little boys. Our boys who were 11 and 9 years old at the time.

    But Mery’s cancer in her lung was 3 times the size of mine.

    Why wasn’t it picked up sooner before it got to this stage?

    The doctors found that Mery’s lung cancer had a different DNA to mine, therefore required a different treatment. We were informed that without treatment Mery would have 6 months, with Chemotherapy Mery would have 2-3 years. The doctors were confident that with Immunotherapy Mery would have 4 plus years. We liked the plus part of that number. But there’s a catch the Chemotherapy is funded by Pharmac, but the Immunotherapy, which is far better with longer life expectancy, is not funded by Pharmac. So Mery too needed to find $9,000 every 3 weeks, which equates to $11,000 per month the same as myself. You choose.

    What would you do? Live for 2-3 years or pay? Are you rich enough to have that sort of money?

    So now for the both of us that works out to over $22,000 per month, and I thank God for all those that contributed, so generously to our Give-a-Little campaign. Lucky for us, but for those that simply can’t, then what?

    As parents to 2 young boys we had to have conversations with people about orphaning our children if things didn’t work out. Who would raise them? Not a conversation any parent should ever need to have.

    Last week I buried my wife; I buried my children’s mother on Thursday last week.

    Why wasn’t it picked up sooner before it got to this stage?

    I’m a widower now. I’m a solo dad now, with terminal cancer. If life wasn’t tough enough. Money is the last thing a family in this situation should be worried about and choosing not receiving treatment when it’s so readily available, ….. if you have the money. Why, are we choosing not to fund these latest drugs/medicines/treatments. The cost to individuals, to families, to this country, with so many affected. No funding for the best medicines, but old medicines, old technology because it’s cheaper. Are we placing money before life?

    We can’t afford not to fund these treatments. The thing is we can afford it. It’s like anything in life, where there is a will, there is a way. You choose. Perhaps when you are personally touched by this evil, then I guess something will be done.

    Perhaps the system is too big to change, so let’s do nothing, its simply easier. Then I ask, is the system working for you, or are you working for the system, a system that is failing. Costing lives.

    I stand here today from a position of gratefulness. Because of the public of New Zealand, especially to those 5 ½ thousand people who contributed to Mery and my Give-A-Little campaign. Whilst, I have been blessed, I know that each day so many people will be diagnosed with lung cancer in New Zealand. Unfortunately they are going to miss out because Pharmac will not be funding them.

    Whilst I appreciate the budget for medicine is not unlimited. The budget must be increased. We are a first world country and should have access to first-class modern medicine. The impact seen in my family I don’t want to see occur to other fellow New Zealanders. I am grateful for Pharmac in what they provide. But unfortunately, they do not go far enough, giving 1st generation treatment instead of the 3rd generation treatment, and Immunotherapy.

    I am not under stating this, that early detection is essential.

    There will always be new medicine, there’s always going to be cutting edge technology. We need to be at the forefront of that or more lives will be lost.

    *New Zealand is ranked last out of 20 OECD countries for the number of publicly funded modern medicines and that is costing people their lives. Pharmac need to have a bigger budget from Central Government or lives will continue to be lost.

    It should not be up to the public of New Zealand to keep people alive through fund raising.

    * Source : https://www.medicinesnz.co.nz/our-industry/comparable-countries

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  • In Loving Memory of Mery Sofia Brooke-Smith

      14 November 2022
    Main image

    We are sad to report that after a valiant battle Mery has departed this world for her heavenly home on November 3rd. She will be missed by all that knew her.

    She was able to celebrate her 52nd birthday with her family in late October.

    Many thanks to all the generous supporters on this Give-a-Little page. Your expressions of support have been and continue to be greatly appreciated.

    A trust fund has been established for their 2 little boys, Marcos and Daniel. All money collected on this page that has not gone toward Graham and Mery’s treatments will be placed into this trust.

    Graham’s battle continues. With access to the latest and best treatment available his cancer is for the moment stable, which is certainly good news and provides some relieve given their current circumstance.

    Thanks again for your generous and kind support. It has been a privilege to be involved in this overwhelming and inspirational outpouring of support and love.

      2 comments  |  Login to leave a comment
    • 14/11/2022 by Dave

      So sorry to hear this news. My deepest Condolences to Graham and his boys.

    • 14/11/2022 by Julie

      Condolences on your loss 🌻

  • Mery is home!

      29 August 2022

    The outpouring of love and support for Graham and Mery’s plight continues to amaze everyone involved. Many thanks to each and every donor. Your generosity and messages of support are greatly appreciated. We have decided to extend the time frame of the Givealittle page until the end of the year. Any funds that are collected in excess of their medical costs will go into a family trust that is being established to provide some future support for the boys.

    Mery has returned home after two months in the hospital. She has been set up with a hospital bed in the lounge as her mobility is still quite restricted and she is not able to manage the stairs. While her leg is improving her mobility is very limited and she requires a walker.

    Mery has had two cycles of chemotherapy and immunotherapy treatment and is scheduled for a third next week.

    Graham continues to respond well to his treatments. His focus continues to be on Mery to ensure that she gets the care and treatments that she needs with the goal of keeping her here for as long as possible.

    In addition to the heartfelt thanks to every donor there are a few organisations that we would like to give special thanks to:

    Lung Foundation New Zealand (https://lungfoundation.org.nz/) for their ongoing support and advocacy to get financial support for unfunded medications. They are untiring in their ongoing education and lobbying to get better funding for more modern medications to be funded. They have reached out to and advocated on behalf of Graham and Mery.

    AstraZeneca (https://www.astrazeneca.com/) for helping to underwrite the costs of Graham’s unfunded medication.

    Kemps Weir Lawyers (https://www.kempsweir.co.nz/) for providing pro bono support to Graham and Mery to help them ensure that their affairs in order. This includes revising their wills and establishing a family trust to help provide for the boys' future.

      2 comments  |  Login to leave a comment
    • 29/08/2022 by Karen

      So happy to hear about the lawyers, organizations and drug companies lending a hand. Praise God! You both are so deserving. Praying for more miracles. 😊

    • 29/08/2022 by Amy J

      So pleased to hear of such good progress. Praying for the best possible outcome. God bless all involved here. Amy

  • Update on Mery's treatments

      25 July 2022

    The outpouring of love and support for Graham and Mery’s plight continues to amaze everyone involved. It has only been seventeen days since we have reached out the public for support and we have just about hit our increased fundraising goal. Many thanks to everyone who has donated to help support them in their tragic circumstances.

    Mery has been in the hospital for almost a month. The boys naturally need their mum and this separation has been difficult for them. Despite as many hospital visits in a week as possible, it’s just not the same as having mum at home.

    Mery’s cancer unfortunately spread aggressively into her femur (thigh bone) and destabilised it so much that she could not walk without a very high risk of breaking it. If her leg had broken it would have delayed her chemotherapy which, in turn, would have been life threatening. The doctors placed a steel rod into her upper leg and pinned it through the femur bone (above and below the cancer area). The surgery was successful with no complications. This has allowed Mery to begin her chemotherapy treatment. She has had one session each of immunotherapy and chemotherapy. She has had no serious side-effects for the treatments.

    Mery is in a lot of pain now but getting better every day. It’s amazing to witness how strong she is as she soldiers on with such high spirits. She will need rehab treatment to walk and regain strength in her leg. This will take a while. It is estimated to take at least a couple of months.

    Graham has been responding well to his treatments. It appears that his cancer has stabilised for now. His focus has been ensuring that Mery gets her treatments in a timely fashion to keep her here as long as possible.

      4 comments  |  Login to leave a comment
    • 25/07/2022 by bob

      Keep up the good fight.We are all wishing you well again.

    • 25/07/2022 by Grant

      Jeez that is a tough fight you have got on your hands. Wishing you all the best. Hang in there.

    • 25/07/2022 by Amy J

      All who know about this wonderful couple are hoping so much for the very best outcome. Bless you all.

    • 26/07/2022 by Felicity

      I'm glad the docs figured out a way to stabilise Mery's leg and she has started on her chemo/immunotherapy journey, that may be a hard one but one day at a time. Good luck to both of you and the boys

  • First year of treatment goal met... New goal for second year of treatment.

      14 July 2022

    Many thanks to all the donors who have contributed to help Graham and Mery get the treatment they need to be with their boys for as long as possible. The phenomenal outpouring of love and support has been nothing short of amazing. It has been such a heartwarming and humbling experience to be part of this fund raising effort.

    It has been a week since the page first went up. We never expected the response to be so immediate and so generous. Many thanks to Torika Tokalau and Stuff for their article about Graham and Mery's situation. That article, in addition to other news outlets picking up the story, brought this tragic story to a much wider audience and really accelerated the number and amount of donations to levels that we never expected to see so quickly. The look of relief on Graham's face as the donations came in was wonderful to see. Every donor should be proud to have done their bit to help relieve Graham and Mery of the financial stress that they were facing. Thanks again to every one of you!

    Mery had the surgery last week to insert a rod into her leg to reinforce her thigh bone that had been severely eroded by cancer. The surgery went well and Mery is expected to begin her chemotherapy and immunotherapy treatments in the next few days.

    We have reached our goal to cover the first year of treatment for Graham and Mery in just under a week. We never imagined that the goal could be reached so quickly. Thanks again to every one who has contributed. Every dollar is greatly appreciated by Graham and Mery.

    Wanting to provide Graham and Mery with as much peace of mind as possible we will be increasing the goal to $315,000. This increase will cover the anticipated costs for their second year of treatment.

      2 comments  |  Login to leave a comment
    • 25/07/2022 by charlene

      My heartfelt thoughts and prayers are with you all 🥰 Love and blessings from my whanau and I ❤️😘❤️😘❤️😘❤️

    • 26/07/2022 by Murray

      thanks for the update - you remain in our prayers.