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Join Nora's Army - Updates - Givealittle

  • Thankyou so much      16 December 2019

    This is our final update before the page closes in a few days.

    The hugest hugest thankyou to each and everyone who helped us, donated and supported us through.

    We have now been home for a few days. Being home after 5 weeks is so incredible. Home is amazing.

    Before we left Houston we found out the T cells had a significant effect on Nora's cancer. They found neurotic tissue in her biopsy and her AFP dropped over 4,000!!! Which is a huge result.

    We still have more monitoring to go until we see the final results but we are hoping for a remission Christmas present.

    We have started donating where we can back to families facing advanced cancer like us. And we will carry this on going forward. Hoping to share some Christmas love especially in our own child cancer ward too.

    Once again thankyou. Nora has helped pave they way in hepatoblastoma research which is so incredible.

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  • A wee bump with a big leap     9 December 2019
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    While, the biopsy went smoothly the day after Nora developed a temperature. We had to go the ER where we stayed for over 10 hours. This was incredibly nerve wracking and emotional for me. So much so that I didn't feel my normal self and gave way to the emotions of the events. All of Nora's results meant the fever was unremarkable and she was luckily discharged.

    Yesterday, we found out that the CAR T cells were found in her biopsy! This is a hugely positive result. One more review of her bloods and then we travel home in 6 days.

    We miss home so much.

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  • Nearly there     4 December 2019

    Nora is so well. She continues to be healthy and has been enjoying herself when we are not at the hospital.

    The T cells are showing in her blood which is great news and first indications are they are dropping Nora's AFP marker which is even better news.

    Her biopsy is scheduled for Thursday and then we return home December 14th.

    Long may the good results continue

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  • Nora is doing great      24 November 2019
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    No real update other than Nora is doing really great. All her blood counts are holding so she has avoided any transfusions. She is looking the best we have seen her since her diagnosis.

    Nora's dad and little sister arrive into Houston on Monday afternoon and we cannot wait to see them!!

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  • Super cells are GO!     16 November 2019
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    At 10.26 this morning Nora received her T cells. As expected it was uneventful. She flew through the 3 hours of monitoring and we have been at "home" for the rest of the day.

    Admittedly, my heart was beating quite fast and my hands shaking as the infusion happened. It was all just fear of the unknown. This has now dissapeared and I feel a huge relief.

    Nora now has weekly appointments and a biopsy in week 2. We must still be cautious and mindful of any complications. A fever or illness would mean a trip to the emergency room.

    Today our girl helped in liver cancer research and that feels incredibly uplifting.

    More news to follow as we navigate the next 3 weeks.

    Love, Elyse

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  • With love, from Texas     13 November 2019
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    Hey everyone,

    Nora has completed day 2 of 3 days of chemotherapy. She is tolerating it well and making her personality known on the ward already.

    Her T cells go in on Friday 15th.

    Very very nervous with the anticipation but grateful for the opportunity to have hope.

    Talk again on Friday

    From,

    Elyse

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  • Update      5 November 2019

    Hey everyone.

    Two BIG things.

    Firstly, with the huge combined efforts of fundraisers in our community of Rolleston and in Blenheim we are now OVER our minimum amount of $210,000.

    We are truly grateful and humbled.

    This means if Nora gets admitted at all we now have a safety net which is the hugest weight off.

    So so many tears have fallen as we have encountered SO many people, businesses and even children with the hugest hearts that have given to help Nora. We are so thankful.

    Secondly, we leave this Friday for Nora to begin treatment on Monday.

    Another update to follow soon

    Regards,

    Elyse

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  • Nora's Army     21 October 2019
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    Christchurch/ Selwyn people:

    A huge auction night has been organised by some amazing people and Nora's school.

    Date: Nov 1 7-10pm

    Where: Pemberton in Prebbleton

    Price: $40

    Guest Speaker: Self professed genetically modified human David Downs (our CAR T cell hero)

    MC: Celebrity chef Jax Hamilton

    There is so much on offer including a $5,000 Media Works advertising package, scenic flights, Augustine clothing, jewellery, kids' party packages, hotel and restaurant vouchers, luggage, spa vouchers, sports gear, band merchandise, all sorts of attraction passes and so much more!

    The details: You will have to leave the kids at home. You get a goodie bag inspired by Nora. Drink on arrival. Food platters. Cash bar. Silent and live auctions plus raffles too.

    More information and how to get a ticket here:

    http://www.clearview.school.nz/noras-army/

    Xxxx

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  • T cell testing has begun     16 October 2019

    We have a tentative date to start the lympho depleting chemo on November the 11th and the T cells being given on November the 15th.

    We should get confirmation of these dates in a few days.

    Nora is currently back at school while we are waiting and our community is organising some pretty epic fundraising for November 1st.

    Another update soon

    Keep the army moving forward!

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  • See ya Houston     9 October 2019
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    We leave in a few hours for home. But we had our final appointment today and got to meet the lead oncologist of the trial. He said a huge thankyou to us for coming and helping cancer research at the frontline.

    How cool is that? All of you who have donated are helping those with liver cancer in the future. You are helping change the world of cancer!!!

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  • T cell generation      6 October 2019
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    On Thursday they took 51 ml of blood from Nora.

    On Friday they did the same.

    All initial testing looks great and they will begin creating the T cells on Monday.

    We head back to NZ on Tuesday night arriving Thursday morning.

    The T cells will be ready in 3 weeks.

    When we come back we are here for 28 days.

    Nora is doing so well albeit struggling in the heat here but we are so overwhelmed by people's generosity and kindness.

    Much love,

    Elyse x

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  • Hello USA     3 October 2019
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    Sorry for the delay everyone.

    After an incredibly long, tiring, emotional day the financial team let us on a payment plan. The final funds are due end of October.

    The following day (yesterday) we started our travels to the US. We are currently sitting in LAX waiting for the flight to Houston. Tomorrow they will draw off Nora's blood and begin creating her T cells. While that is being done we can return home to NZ for 3-4 weeks. I will post a further update later today.

    Hugest thankyou to everyone!

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  • The rollercoaster continues      1 October 2019

    Yesterday Texas got in touch and asked to see Nora this week to draw her blood and start creating the T cells. This morning I spoke to the financial team and they have DOUBLED the estimate. My heart absolutely exploded in my chest.

    We now need another $70,000 NZD!!!

    This has shocked us and we are still trying to negotiate with them and hope they will still see Nora this week.

    If you can please continue to share and donate as this is now, once again, out of reach.

    Kind regards

    Elyse Guise

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  • This is amazing!!!     26 September 2019
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    We are so overwhelmed. We are so so close. We are still waiting on the final estimate from Texas and any other associated costs should Nora get unwell or have to be admitted. One day in the ICU costs between $20,000 to $40,000 USD. So if we get above our total we will leave it open. Any money that we don't use will be put towards a special project we have planned for future families facing cancer.

    Much love to you all,

    Elyse xxx

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  • Wow! Wow!      21 September 2019
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    Overwhelmed is an understatement of how we are feeling. Tears have been streaming on and off.

    We have been living with a dark shadow for so long. A dark shadow that might take our Nora. But, the donations, shares, fundraisers, influencers who have posted for us, people who have contacted the media and the hearts of strangers is shifting that shadow.

    THANK YOU FOR ALL YOUR LOVE XXXX

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