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Help Ka'iulani beat Neuroblastoma - Updates - Givealittle

  • Update for 2018!     30 January 2018
    Posted by: Alexandra Harrison Forbes
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    Ka’iulani turned 3 years old last December at the same time she completed her tenth round of chimeric immunotherapy with chemotherapy. Unfortunately the disease had started to grow slightly so we decided not to proceed to round 11 and instead gave her December off from treatment to let her enjoy Christmas with family. The immunotherapy had been heralded as having good results against neuroblastoma so having invested 10 months into this drug to fight the cancer without improvement, we were left extremely disappointed

    In January 2018 Ka’iulani travelled to Sydney for MIBG Radiation Therapy. Nuclear medicine is injected into the body in the hope it attaches to the tumour cells and kills them. The process was a lot more involved than chemotherapy as Ka’iulani was radioactive meaning people were only allowed in her room for short moments during the 4 days of treatment (see attached photo). During treatment Ka’iulani was put under sedation and on automatic breathing. It was a great relief when she started breathing on her own again as the machine was turned off! If the cancer decreases or stays the same size we will be back to Sydney in March. If it grows we are not permitted to do the second round. Although they have told us it will not remove the disease we have been praying for a miraculous improvement!

    Last year a new antibody trial was started and has moved into phase 2. This trial was for kids that had similar cases as Ka’iulani with tumours and disease in both the bones and bone marrow. So far the trial has had very good results and gives us hope the same will be achieved for Ka’iulani if we can get on it. It is available in both New York (USA) and Barcelona (Spain), so that is where we are trying to get to next! Barcelona will be cheaper than the New York option so we are continuing our fundraising to afford that option. Watch this space…

    As always a massive thank you to everyone who supports us!

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  • update #2     2 May 2017
    Posted by: Alexandra Harrison Forbes
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    Kiaora everyone,

    We continue to get so much support and love from all over and we thank you!! I'm sorry we haven't been able to keep in contact with lots of you and to even thank you!! Our list of thanks is so huge and we will thank you all personally one day hopefully soon!! So please don't feel like you haven't gone unnoticed or unappreciated as that's far from how we feel, we have been finding the last few weeks extremely draining and emotional. We only really have enough energy to look after Ka'iulani. Not to mention our gorgeous 7 month olds needs too. But some things have just got to give and this means we haven't been able to respond to messages, emails, acts of kindness and all your amazing fundraising efforts!!! We see them all and they all bring us to tears!

    There is however one group of people that's outside our family and friends’ support that we would like to mention that have been there from the beginning and have done absolutely everything they possibly can to help get our girl the treatment she needs and that's the CHIEFS. Liam Messam, David Galbraith, Dave Rennie, Andrea and the rest of the team and management have been just unbelievable and shown soo much love and support to us. Ka nui te Aroha kia koutou.

    We are going into our 7th week continuous week in hospital. We have been getting a few hours a day to leave hospital which has been really great for Ka'iulani’s wellbeing. We have had so much happen in the last few weeks, but on a positive note we have been given a spot on the USA immunotherapy clinical trial allowing us to stay in NZ for now! Ka’iulani is the first person in NZ to go on this trial, so it’s exciting but massively anxious also. The infusions for this started yesterday (Monday) and go for 5 days. We are anxious because we know how much this trials means to us and it's pretty much our best chance for Ka'iulani to kick this cancer and reach remission however in this cancer they call remission NED (no evidence of disease).

    Hopefully all goes to plan and the trial drugs manage to shrink her disease.

    The next step is to travel to the USA to start a vaccine treatment, DFMO treatment, and investigate removing tumour from her spine. The fundraising continues and we have an amazing team of helpers behind the scenes who are planning our next big event which is Stand Up for Kaiulani Gala evening on the 27th May, at Eden Park, including special guests Graeme Henry and Wayne Smith, entertainment by NZ singer Ria Hall, and MC James Mconie from the crowd goes wild. If you are interested in attending this awesome event, more information can be found here:

    A huge thank you to everyone and your amazing contributions to support our little princess so far.

    Manihera, Moana, Ka’iulani & Te Atakohu

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  • THANK YOU!     29 March 2017
    Posted by: Alexandra Harrison Forbes
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    Ngaa mihi nui ki a koutou

    Hello everyone, first of all THANK YOU SO MUCH!!! We have been overwhelmed with all the support and messages of love and encouragement. We cannot believe how many of you have supported us from all over the world with your donations enabling us to be with Ka’iulani and making each day as good as it possibly can be for her! These funds will be going towards accessing the treatment she needs overseas that is not available here in New Zealand.

    Ka'iulani has recovered enough from her 9 hour surgery to be let out of hospital today and is staying in Hamilton for the weekend to spend time with family before her 2nd round of surgery on Monday.

    The Chiefs rugby team have dedicated their game to her on Saturday so I encourage everyone to go and support the team, they have been awesome with their willingness to support her and some of them will even be shaving their hair off tomorrow morning (Thursday) on the TVNZ Breakfast show so tune in!

    Because of the nature of her cancer and how it has not responded to 4 rounds of chemotherapy, we are looking at heading overseas earlier than first thought. In terms of next steps for Ka'iulani, after the 2nd surgery to remove as much of her abdominal tumour as possible, tumour tissue will be analysed to determine the treatment required to stop the disease. The treatment Ka’iulani is likely to need is not all available in New Zealand, which is why we are doing everything we can to raise money to access USA treatments that are specifically for her disease condition and have proven successful.

    Again we want to thank you all so much for your support, please know that we read every message and every kind word helps lift us up! We are on a journey and we could not do it without you all.

    Arohanui, Moana & Manihera

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