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Bevacizumab

Jared and HannahOver the past few days we have been overwhelmed by the phenomenal outpouring of support, prayers and generosity. There have been so many messages that it is physically not possible to acknowledge each one separately, so Hannah and I would like to take this opportunity to collectively thank everyone who has contacted us during this time.

One of the decisions we have had to make over these few days is whether or not to pursue including Bevacizumab in my chemo regime. Of course if it were funded by Pharmac, then it would automatically be included, but since it isn’t, there are financial implications and funding challenges that need to be addressed if we go down that path. One thing that has become clear is that there are a lot people who are willing to help us fund this, as realistically, we can’t fund it ourselves. I personally have always been a little reluctant to fund a drug that does not change outcome, I haven’t seen the point in spending large amounts of money if the final result is still the same. However, in light of our change in circumstances and expectant parenthood, the timing of that particular outcome has all of a sudden become important, and I find myself re-evaluating that stance. Surviving for as long as possible is not so much about me anymore as it is about Hannah and our unborn child. With all of that in mind, we have decided to try and raise the funds for Bevacizumab.

This isn’t a decision we make lightly, and in large part it is in response to the overwhelming generosity of offers to help make it happen. To a certain extent this involves swallowing a probable misplaced sense of principle of not wanting to ask people for financial support, particularly when the outcome doesn’t change. It is when I reverse the situation and consider what I would do for a friend in the same circumstances that I can be convinced.

To that end, we have allowed a friend to set up a page on givealittle.co.nz in order to raise funds for my treatment. We are appealing to those who are willing and to those who can afford such a generosity, and place no expectation on anyone for anything. Hannah and I are truly humbled by the longstanding support and generosity of our family, friends, colleagues and people who follow this blog, many of whom we have never met.

For those considering donating, I feel it is important you know what you are donating towards, so here are a few salient points:

  1. Bevacizumab (Avastin) is a monoclonal antibody that essentially inhibits angiogenesis, this means it stops tumours from creating their own blood vessels for ongoing nutrient and oxygen supply as they grow. The overall effect of  this is a reduction in tumour growth. It is not a tumour killing agent, it is purely one that slows the growth down. This drug will serve to buy me time with Hannah and our daughter, nothing else.
  2. Hannah and I have spent this year saving money specifically in anticipation of the birth of our child and associated maternity leave. This was also anticipating the likelihood that my income could cease at some point. This isn’t enough to cover the drug costs and it’s need as originally intended still remains, particularly as my income is going to become less reliable.
  3. I am currently inquiring about cashing in my kiwisaver and superannuation under the “severe illness” clause. We can use this as contribution to the cost.
  4. I will have a CT scan 3 rounds into the treatment to establish response so that further money isn’t spent if it is proving to be a futile effort.
  5. The cost of the treatment for 10 rounds will be about 6,000 dollars per round, meaning a total of 60,000 dollars.

This is not a small amount.

It is with a humility of spirit that Hannah and I post this, and a gratitude that extends beyond dollar value, towards the good will and generosity that has touched us over the past few days.

Click here to contribute.

 

Until next time….

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Categories: Blog, Cancer Update
  1. October 22, 2013 at 5:00 pm

    What is the address for the GiveALittle page?? I’m so pleased you able to reach out and give your community a chance to help you. I’m in!! And will do everything I can to help!!! Much Love, Kristin Paterson and family xoxoxox

    • Darran
      October 22, 2013 at 7:06 pm

      It’s the link at the bottom of the page 🙂

  2. Naomi Bell
    October 22, 2013 at 5:01 pm

    Wow – good on you Jared and Hannah! I was so saddened to read your last post Jared but am really glad you are giving this opportunity for others to help as I too want to contribute.
    We’ll be praying for the best possible outcome.
    God bless.

  3. Jared
    October 22, 2013 at 7:03 pm

    Hey, the address is http://www.givealittle.co.nz/cause/jarednoel

    You can also click the bolded link at the bottom of the blog as well. Thanks so much for your contributions.

  4. Soraya Sabetian
    October 22, 2013 at 9:44 pm

    We are happy to help in any way. Our thoughts and prayers are with you. The sabetian kan family xxxxx

  5. Theresa
    October 22, 2013 at 9:52 pm

    Amazing response. Good call & as always Jared, well written. May you be held in the palm of Gods hand.

  6. October 22, 2013 at 10:11 pm

    Jared, I just accidentally stumbled upon your post and realised we went to Rangeview at the same time. I pray that God in his mercy will let you meet your precious daughter. Thank you for being so candid, and sometimes clinical, with your posts. I have found them rather cathartic, my younger sister was diagnosed just over a year ago with Pancreatic NeuroEndocrine Tumours and has been advised of the 20% chance of survival over the five years. Good on you for asking for help/giving people the opportunity to help…it can feel quite hopeless sometimes on the sidelines and it is good for us to give 🙂

  7. Hanna
    October 22, 2013 at 11:43 pm

    Many prayers and wishes your way,,,Wish you all the very best,,,,Knowing that your daughter is due 21st Jan and time is in essence,,think you also ought to talk to doctors about an induction of labour around 37 weeks,,,thats likely to buy you time without significant risks to baby…..all the best, we all want to help

  8. Cathy's
    October 23, 2013 at 8:35 am

    Hi we would like to help out with baby clothes items if you would like. Let us know if you would like this and we can drop them off.

  9. Linda & David Marriott
    October 23, 2013 at 8:38 am

    Our hearts go out to both of you Jared and Hannah – We are praying for you both and we will certainly try to help financially when we can. xo

  10. Justine Higgins
    October 23, 2013 at 9:11 am

    Hi Jared. A friend put me onto your blog this morning. I have just read it with much sadness and sympathy. My partner Jed (just turned 41) went into doctor on Aug 11 this year with abdominal pains, severe, and after ultrasound and bloods we got told he has bowel cancer that has matasticised? To the liver and one lesion in the lung. The last 8 weeks have been a blur. We have been together 3 years, and like you had a lot of dreams for future – babies, travel, wedding etc. he had his first round chemo mid Sept that was 5fu (oxyliplatin infusion) and 14 days capecitibine. He had a rare reaction to the infusion which caused a huge bleed in the liver and he spent 8 days in hospital with coagulants and infusions and twice told he wouldn’t make it. BUT he did, going from fit healthy sporting guy to losing 12 kgs and no muscle tone he has found it incredibly hard. Our oncologist decided it would be a very small chance of it happening again, so last weds with huge anxiousness we went in for 2nd round 5fu infusion and he is up to his 6th day of capecitibine, all going well so far. We have got a wedding to look forward to in December, so something positive to focus on.
    He had a little bleeding last year but was put down to piles. Reading your blog, as horrible as it is I think we are kind of blessed to find out at a relatively late stage and didn’t have to go through years of what you have.
    Life is so precious, he can’t be operated on as liver is basically full of the cancer. The oncologist isn’t expecting the chemo to shrink that cancer at all. She too has reccomended avistan but not until the next line in about a year (all going well). We have another (#4) ct scan after the next lot chemo in about a month to see if its responding. I will certainly be ‘giving a bit’ to your cause as I hope if we’re in the same position people will help us. All the best, and regards to your beautiful healthy wife and daughter.
    Justine.

  11. Janna Hacking
    October 23, 2013 at 11:06 am

    Jared, you so deserve all the donations and love you receive. You are an inspiration to everyone in reminding us all how precious life is and to cherish every single minute. Stay strong dude, im sending positive vibes your way!

  12. Mel
    October 23, 2013 at 11:19 am

    Hey Jared, found your blog via the rapid world of social media. I recognised God in your words before I read too many of them … my heart breaks for you and your family reading your news – sensing your pain, struggle, courage, strength. Your love for your family, for God, and for others. It’s all so evident.

    This … is so good and so bad. Yet I know you are held and cherished … come what may, you are in the best and safest place. Be praying for you guys. 🙂

  13. Giota
    October 23, 2013 at 2:24 pm

    I have never met you or your wife but I have followed your journey (my husband also had cancer). I truly hope you get the opportunity to meet your little girl. I’ll be praying for you.

    I hope the $200 helps.

  14. brian
    October 23, 2013 at 4:49 pm

    Just discovered your blog today while looking for first hand accounts of chemo as my sister-in-law has her first treatment tomorrow. Wound up reading the whole thing word for word. So sorry to read the latest news. Best to you, Hannah and the little one from Virginia.

  15. Melissa
    October 23, 2013 at 5:22 pm

    Hi Jared. Crazy needle phobia lady here. You looked after me pre-op a few years back before my open heart surgery. You spent a long time talking to me to which I am grateful for. Not long after my op we discovered my dad had bowel cancer which was luckily discovered in the early stages & treatment has been successful. Sadly since then my father in law has been diagnosed with stage IV bowel cancer 😦 Also my brother in law has also been diagnosed with an aggressive GBM brain tumour a year ago. Things weren’t looking good so a decision was made to raise funds for avastin. Just over a week ago he completed his first course & the MRI results are amazing. While it is not a cure , it has bought him time, time to spend with his 2 young boys & you can’t put a price on that. Good luck with everything , will make a donation love Mel xx

  16. Manoja St John
    October 23, 2013 at 10:01 pm

    Jared, I was so inspired by your blog. Your insight, wisdom and grace in dealing with your illness is inspirational. I hope this buys you months. I hope you meet your daugher. I wish they would find a cure for you. The world needs people like you. You make it a better place. With love Manoja Kalupahana.

  17. Jenny
    October 23, 2013 at 11:56 pm

    The best wishes for you and Hannah, you are so brave. I hope you get to spend as much time with your daughter and Hannah as you can, and treasure every moment.

  18. Gloria
    October 24, 2013 at 9:02 am

    Hi Jared & Hannah,
    I have been reading the news article this morning, and then listened to your ‘Promise Keepers’ talk. I’m SO pleased you know and serve our Lord. I thank our Lord that you have chosen to draw closer to God through this time. Your testimony is an inspiration.
    This morning’s ‘verse of the day on Bible Gateway’ is: “The fear of the Lord Is the beginning of wisdom, And the knowledge of the Holy One IS understanding.” Then it follows on with “For by me your days will be multiplied, And years of life will be added to you”. Proverbs 9:10-11.
    My husband and I are praying for you, for continued strength, peace and it goes without saying ………complete healing!. As the scripture says “…years of life will be added to you”.
    Praise God He has given you understanding of life itself and the purpose He has created you for – giving all Glory to Him. – Our Heavenly Father says “Well done good and faithful servants”.
    Bless you both heaps.
    Gloria (from Hamilton)

  19. Anne Buchanan
    October 24, 2013 at 9:59 am

    Hi Jared & Hannah. Saw the Herald article about you today and have found my way to your blog. I can only imagine what you’re going through but just wanted to write and let you know that your experience and testimony has really touched me. I’m praying for you both and for your little daughter and that God would enfold you in his loving arms and give you the strength you need for the treatment ahead.
    Blessings and prayers
    Anne B in Auckland

  20. Nzyimi Kyalo
    October 24, 2013 at 10:11 am

    Hi, I read every word above and I couldn’t help but notice how courageous you are. You are a fighter and a true father.
    Personally, I can’t help financially but I will go on my knees this night and say a prayer for you, your lovely wife and our unborn and highly loved baby.
    I trust and pray you will be present when the child will be graduating from university.

    Best of wishes from Africa.

  21. Rory Downey
    October 24, 2013 at 10:45 am

    Matthew 28:20

  22. Mae David
    October 24, 2013 at 12:56 pm

    I am a great believer in the power of collective thought and hope our collective love and wish for you to have time with your baby girl comes true. She will do so much to heal Hannah’s hurt and yours as well. Her pure love will shine through and even though you will not get to see her grow old, she will have a very special guardian angel to watch over her always.

    And any extra raised can go towards your baby girl. We feel so powerless and so it is so very wonderful that we can help in some way.

    So with LOVE and a koha, I wish the chemo buys you as much time as possible XXX

  23. Shaun Selvaratnam
    October 24, 2013 at 1:25 pm

    Hi Jared, I really don’t know what to say to you man. My name is Shaun Selvaratnam and I’m about your age and had an operation and treatment last year and chemo too. Man I admire you. I just wish God would bless you and your wife and your baby that’s on the way. I wish I could meet you man, but I realise this is a time for you to have privacy. Enjoy your wife and daughter even while she’s in your wife’s tummy.

    I promise you that I will be praying for you Jared, and I will be praying for your wife and daughter too. The good Lord bless you and your family.

    If there is anything I can do for you man. Do call me on 027 – 563 9444.

    Love you man.

  24. Tim
    October 24, 2013 at 3:25 pm

    Thanks for sharing your story. I heard you on LIFE FM this morning and was deeply touched. I lost my wife in 2001, 13 years after having a heart transplant which was mere days after our boy was born. We were so blessed to have her with us for and that our son knew her and God has further blessed me further and I have married again.

    Most of all I pray for miraculous healing for you and God’s strengthening for Hannah.. I pray that you meet your daughter Jared. I know you know all of this but, one day, when all things have become new, you will be reunited with that wonderful family and better even than that (If that be possible) meet your saviour and creator face to face.

    So glad you made your target and hope the funds keep poring in to help along the way.

    All thoughts and prayers
    Tim

  25. Maree
    October 24, 2013 at 3:38 pm

    Hi Jared and Hannah,

    We prayed for you at home-group last night. There is so much love out there for you guys! People are praying hard-out for you and your family, I pray this will be a blessing and encouragement to you. So glad you have taken this step to start Avastin and we will be praying this medication and the chemo will keep the cancer at bay. We are praying you will have the opportunity to spend much time with your daughter and get to enjoy many wonderful moments with her! Have seen the article in today’s herald – thank you for your bravery in sharing your journey with us. We are so happy with the response you have received and from the donations given 🙂 We serve an awesome God!! We are with you guys and will support you all the way, keep on keeping on! Lots of love,
    Maree xxx

  26. lizzie
    October 24, 2013 at 6:21 pm

    What a very lucky baby to have such lovely parents! Your love will be inside her always. And you will literally live on through her – it is wonderful to see your partner pop up in your children. (Oh good lord, I have turned into a hippy!) Kia kaha and peace be with you.

  27. October 24, 2013 at 7:22 pm

    Jared I left a donation on the GiveaLitte.co.nz site but I didn’t leave it for you, I left it for your daughter. I hope this money gives you the chance to be there when she is born and for as long as possible afterwards. I’m sure you’ll be making plenty of video messages for her now that she’ll be able to look at as she grows up. One for her starting school, one for starting college, one for her wedding(s) 🙂 etc.
    The success of this fundraising perhaps give you the opportunity to look into further “stalling treatments” that you would have otherwise discounted. I hope that is the case.
    Wishing you every success available to you.
    Brian Doyle

  28. Lourens Botha
    October 24, 2013 at 8:19 pm

    Hi Jared and Hannah,
    When I picked up the news paper this morning and read your story, little did I know what impact it will have on the rest of my day. The whole day I remembered your story and this afternoon, waiting for my wife at the doctor’s, there it was again, on the table in reception lying on the coffee table – today’s NZ Herald with your story on the front page. I took a photo of your blog address and when we got home, looked it up. When I heard your testimony, my spirit jumped up in me as I realised this is the third time today that I saw your story and I was wondering Lord, what are You telling me? To cap it all, this evening during our quite time and Bible study, the Lord led us to read from Acts 3 – the story of Peter and John who healed the crippled man. Verse 6 says: “Silver or gold I do not have, but what I have, I give you. In the name of Jesus Christ of Nazareth, walk!” My words: “Be Healed!”. I know you are a true child of God and that a lot of people have prayed for you and Hannah and maybe this is just another prayer, but know this: God will not remind me 3 times today to get in contact with you and let you know that there are a lot of ex South Africans that will be praying for you for total healing. At PK this year, we saw so many healings being performed by God through prayer and faith and God has given you the promise of new life in your unborn child and I know as a grand father of one, there is no other way but to know that God has you and your family in the palm of His hand.
    May God Bless you and keep you.
    May His glory and power shine upon you and keep you save and
    may you be healed in Jesus Name!
    Lourens and Elize Botha

  29. Daria Kelly
    October 24, 2013 at 8:26 pm

    Jared, it all has been said before – it’s a wrenching heartache with a brave face of optimism. Thank you for sharing your story and will be praying for you and your family.

  30. Joe
    October 24, 2013 at 11:17 pm

    So sorry to hear your story.
    Noel, don’t give up, u can make it!
    U will see your baby daughter!
    We all here to help.
    Best wishes !
    加油!永不放弃!

  31. Maggie Cullagh
    October 25, 2013 at 12:00 am

    I did a night shift with you once , wat an awesome inspiration I member thinking. 🙂

  32. Fi
    January 6, 2014 at 11:33 pm

    Hi Guys just a note from Aus. In my cancer journey the medico’s said that Avastin can be supplied by the company on compassionate grounds. You will need an advocate from within Oncology but it’s worth a try given that it seems to be working effectively. Aren’t we lucky to have these new agents? All the best I will keep an eye on your news makes me feel not so isolated!

    • Jared
      January 7, 2014 at 7:52 am

      Hi Fi, in NZ Pharmac has consistently refused to fund avastin on compassionate grounds despite multiple appeals over the past 5 years. It’s basically a funding issue that comes down to cost:benefit ratios. Avastin only increases life expectancy of bowel ca by 3months on average, and never changes outcome. Hence its cost is too high for the benefit it gives. I imagine that over time this will change as public pressure increases and funding also increases. There is also increasing evidence of the use of Avastin in not just 1st line, but 2nd and 3rd line therapy as well, so I suspect there will be some reevaluation and hopefully change over the next couple of years.

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