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We need YOU! Cancer is messing with our MUCH LOVED DESRAE - Updates - Givealittle

  • Thank you      22 May 2020
    Posted by: Glenda Tuaine
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    Firstly THANK YOU every single person who has given a little, who offered support, kind words, thoughts, a karakia, all of you we all send you a huge hug! As this Givealittle page draws to a close Des, Chris, Nikaia and I all feel an overwhelming sense of gratitude and thanks to you all. Thank you for your donations and support. Des has felt your love.

    We started this page one year ago and it was not easy for Des ,Chris and Nikaia to make their life and Cancer battle public. I admire their strength, determination and love they share as a beautiful whanau unit.

    This update brings some good news. It appears that Des's body has responded to part of her treatment positively and at this time the Doctors have decided against the surgery and will monitor how she goes. Now as you can imagine Des and Chris went to the hospital fully expecting to get the appointment sorted and be briefed on the surgery and outcomes.... to have that spun on its head in a bloody great way and Des now not needing to get her mind around being cut open again!!! YAHOOOOO.

    Des told me that Chris and her were in a dream-like fuzz during the drive home, having worked themselves up to the idea of to prepare for surgery, but to be told otherwise. As she said Des had the deepest sleep she has had in ages.

    So although she is still having to undergo treatment for the tumor she no longer has to deal with surgery on top of that. She starts back on weekly paclitaxcel, an intravenous chemo on 26 May so fingers and toes are crossed.

    God Bless you all for giving, for caring and for being great people. Stay safe in these crazy days and as we all face battles in life this page has taught me to remember and remind others you are never alone in a battle and that love and kindness is always around you.

    Much love from all of us and keep in touch

    Arohanui

    Desrae, Chris, Nikaia and Glenda

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  • Birthday celebrations for Des     28 April 2020
    Posted by: Glenda Tuaine
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    Our Des is a 70's baby born on ANZAC day too!! So like so many of us in the world right now we "the Aunties" as we call ourselves have been weekly Zooming in from our respective homes to check in with each other. Last weekend we celebrated Des's Birthday in our 70's get up with appropriate 70's attire and food choices. Out of crazy times we all still need to laugh at ourselves, dance to 70's tunes and enjoy each others company.

    With the lockdown scenario Des's check ups and medical meetings are done at distance and this as you can imagine adds another layer of stress to an already bloody stressful time. Last week Des received some news that wasn't what we all wanted that the Tumour has grown so her Oncologist is now advising she needs surgery. Yeah! A lot to get your head around at this time with bloody Covid 19., lockdowns etc. But again Des amazes me with her strength and wisdom. Yes this is gutting news for her, and she is frustrated, but in all of this Des has grown an undeniable internal strength mentally and physically that I liken to an Ultra Marathon Runner. The extremes she goes through keeping capable and resilient, managing pain and discomfort, adjusting to an ever changing environment, yup guys she is my Ultra Marathon Runner and this fight is Marathon and we have to give her the best gear to win this race. So I know times are tough on all of us but if you can send some healing thoughts or are able to Givealittle - God Bless you!!! Stay safe and stick to the rules of Lockdown.

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  • It suks but we need your help again!     29 February 2020
    Posted by: Glenda Tuaine
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    So a couple of weekends ago I got to have the most awesome weekend in Auckland with Des and all the Aunties (a name we have for a bunch of us that are close) We are a sisterhood of love, we care deeply for each other and we when one of us hurts we all hurt. So here is the thing that dam Cancer that is tucked away in our Des is being stubborn and holding on when we all want that little bastard to disappear. Des has been told by her Doctors that she needs to undergo another round of Chemo and this will be starting very soon. As you can imagine this is gutting news but our Des is incredible, brave and so much of an inspiring person. She approaches all of this with calm resolution. But as a good mate I can see in eyes this is devastating news that she has to go down that chemo path again. So please all our you I just ask you to take a moment to register that. I know everyone has battles but our mate is again heading into battle with that bastard Cancer. She needs all of us again - we need to help financially again. So what ever you can give please give. I love my mate deeply and I just ask you all for help.

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  • 2020 and new beginnings      31 December 2019
    Posted by: Glenda Tuaine
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    Kia orana everyone - as we see 2019 out and 2020 in thank you, thank you for being amazing humans that care. I truly feel overwhelmed at how this page has opened up pathways for people to connect with Des Chris and Nikaia and to help them confront the nightmare that is cancer head on. How your support has enabled them to convert the desperate feelings in to positive approaches that saw Des take really brave moves in setting her treatment plan to include holistic treatments along with conventional ones. Des Chris and Nikaia are brave. Des has returned from the Qigong retreat in China with new outlooks and perspectives. In the time she was away Chris being the legend builder that he is constructed a small meditation hut for her in their back lawn made with materials that a dear friend of his gave him before he passed away with Cancer; making the build and the meaning of the build incredibly emotional and heartfelt for Chris. As my beautiful friends move into 2020 they still need us - they will always need us and we them. So drawing this year and update to a close and being very philosophical I leave you with a beautiful pic of what love can build. Please do pass this on we still have a goal to reach and I know we can get their. Thanks - much love and blessings to you all

    Des, Chris and Nikaia have had a tough year but through your help love and support have been able to breath a little. xxx

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  • The Inspiration that is Des     18 November 2019
    Posted by: Glenda Tuaine
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    Over the past couple of months Des and I have managed to have a few of our Facebook chats and each time I come away from them in awe of my mate who is living with cancer. I can not fathom how living with cancer works and how I would cope but the strength, the patience, and the honesty makes my mate Des so inspiring. I can not fathom each morning waking up knowing that you have cancer, knowing that you require treatment and that some of that is going to be hideous, painful and demoralising. How do you stay strong? But she does, Des remains calm, she is an inspiration as are Chris and Nikaia,in my mind they are total legends.

    Des and I chatted when she was in Melbourne last month about to attend a Cancer retreat. The support all of you are giving by Giving a Little has allowed Des to treat herself not only with the conventional drugs but to be able to attend mind, body and soul workshops and retreats that are helping her to deal. To deal with what her life is and what she can create for her future.

    The Doctors have advised Des that her blood markers are high again and that further bouts of chemo are possibly on the cards. This is not great but Des is treating herself with respect and care, learning coping techniques and practicing Qigong which has been a god send for her. Here is a little info on it.

    Tai Chi and Qigong are ancient practices that have led to improved health, fitness, wellbeing and longevity for countless individuals up to the present time. They both cultivate the Qi, also spelt Chi -- the life energy that flows through the body's energy pathways -- by combining movement, breathing and meditation

    Des has become a follower and is getting great benefits from regular practise of Qigong. Our amazing mate is currently in China attending an intensive retreat for Qigong and I will update you on her progress soon, but needless to say this trip has given Des new directions and purpose.

    Personally I want to let you all know that I am so grateful to all of you and this givealittle page is just pure soulfood. It reminds me daily how wonderful humans are. THANK YOU

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  • Beautiful catch up email from my buddy Des.     18 September 2019
    Posted by: Glenda Tuaine
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    Words from Des

    Been chugging along here, Chris has built and installed a wee wendy house, looking garden shed for a friend today and is gearing up to design and build a kitchen in Otaki. So all local work which is good. Miss has a couple of games left of the netball season and is looking forward to reclaiming her Saturday's again, although next month junior surf starts on a Sunday, so there goes that "weekend free" theory. She loves it none the less!

    Have continued on with my 3 weekly Avastin and oral chemo tablets regime. My markers have been sitting quite high until recently.......when, I hear you say??? So I took myself off to a Zhineng Qigong four-day workshop with Master Xi in Welly. My osteo recommended the course as the type of Qigong (there's 3,000 different types of qigong!) -its similar to tai chi and uses meditation and slow movements which open up blocked energy and works on different parts of the body, its proven to assist people with different types of illnesses at all levels ie. chronic-terminal conditions. The creator of the modality Dr Ming Pang, was also involved in building the first medicine less hospital (near Beijing), where people practice the same method to rid their ailment.

    So I take myself off to day 1, not really knowing what to expect and was appalled at amount of sweat that was pouring off me while doing (very) slow, flowing movements. I couldn't really meditate either as my brain kept flicking about. The short sleep after lunch (to aid digestion) was more manageable. The following days were a lot better as my body didn't scream at me whenever I did the bending down stretches, I'm sure if I'd done yoga my body would be more open to some of the exercises. Cut a long story short I've never felt as invigorated as I have done after that workshop. I'm standing a lot straighter, I've less brain fog and I'm getting about a lot easier. And Chris says (bless), I'm a lot easier to be around. Not sure what he means......

    So I've been practicing the exercises since the workshop and there's a lady in Otaki that's moved up recently, whose keen to keep the practice up. And because I'm not really doing things by halves these days and I'm fuelled on by the fact that my tumour markers have dropped from 1400 to 700 (I had my bloods done 3 days after the workshop, pre Avastin shot), I am a Qigong convert.

    Let's catch up on 17 Sept, my next appointment.

    Pic is Dessy helping our Buddy Lesley clean up her yard after she finalised the sale of her house.

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  • Kia orana and sorry I haven't updated in a while     14 August 2019
    Posted by: Glenda Tuaine
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    Yup Life can be busy!

    So over my non -updating period Des and I still have had some great catch ups over the Facebook chat and she is doing well. The sessions at the hospital with the avastin and chemo concoctions surely can take it out of her and as she says - she hates having all the chemicals in her, but it is a course of treatment that is necessary at this time. Today is a big day as she will get an update on her progress from the Doctors. Des has been feeling good and she looks good too so we are crossing fingers, toes, legs and eyes that the progress is good.

    We were laughing yesterday as she was telling me she had a big INXS day dancing around and listening to the Mystify Album. We decided next time we are together we will rock some INXS t-shirts and dance around her lounge with it up full volume.

    You know when you have a friend that is facing what she is everyday the joy of talking, giggling, joking and then getting serious about things that are on her plate to then move on back to giggles laughter and maybe solving some of the worlds problems is what friendship and love are all about. Des knows she has a family of people out there through your kindness on this page that have lifted her and made her treatments possible.

    SO crank up some INXS and jump around your lounges because we love yas

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  • Giving a little means a lot.     9 July 2019
    Posted by: Glenda Tuaine
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    Update from Glenda;

    Kia orana everyone,

    I start my day opening up my emails and everytime when I see the Givealittle notification I am so blown away at the love and generosity of the community around Desrae, Chris and Nikaia. Thank you so much.

    Last week Des and I had a grand ole natter on the FB chat and as we pondered everything from her treatments to politics to arts to crazy ideas for productions we both acknowledged how blown away we all are at the response this page has had and how friendship, kindness, care and love are powerful healers for all ailments.

    As you are aware Des has started the treatments that are administered privately - the big cost items, but with the big cost comes a new level of care that gives our Des a very different experience. When Des goes to the private hospital to get the Avastin she is greeted with a paper and taken to a quiet and comfortable space to have the drug administered, she is offered tea and Chris a coffee. As Des said in her own words "It is a place of healing" . So bring it on I say.

    Because of all of you Des is being healed and with all the love you're sending the decisions Chris and Des have to make are a little easier. So again THANK YOU.

    Image is of Des after her Chemo in 2017 when she celebrated the good news her tumor had shrunk by doing the 2017 Kapiti Women's Tri - that's our girl pretty awesome ae - so the challenge is to you all. After her treatment let's do a Triathlon - if DES CAN WE CAN.

    Aro'anui kotou

    G

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  • The journey is long but by golly she is tough     24 June 2019
    Posted by: Glenda Tuaine
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    Update from Glenda:

    So today I spoke with Chris. He was at Palmerston North Hospital and Des was in having her first round of the drug Avastin which I googled so we all can understand what it does - This medication is a man-made antibody (IgG1) used to treat various types of cancer. This drug works by blocking a certain protein (vascular endothelial growth factor-VEGF) thereby decreasing the blood supply to the tumor and slowing tumor growth.

    Collectively we have supported Des to get this treatment and I can never stop thanking you all. This is a drug that is not funded by the Government and one that we all hope will really make a difference. It is a conventional treatment and one that Dessys Oncologist is very keen for her to take.

    So everyone let's get vibing again and send those positive energies our Desraes way!

    Chris is amazing and keeps everything sensible and ticking along, he takes it all on and maintains a calm for the family that must require a tonne of internal strength. So my friends please wherever or whenever you can help - help. He needs his batteries recharged by us often me thinks. So bolts of Positivity his way please.

    Nikaia is a champ so if you have weekend plans remember she might like to join you too, she needs a network of Aunties and Uncles right now as well.

    Des is fragile as she battles this with all the discomfort, frustration and endless medical procedures, drugs and side effects she has a journey on her hands. So I leave you with a pic of her on the Motu after paddleboarding on Muri Lagoon in 2018.

    Calm and steady my friend.

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  • Kicking Cancer - I am in awe of my mate all the time     18 June 2019
    Posted by: Glenda Tuaine
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    Update from Glenda:

    Kia Orana everyone,

    FIrstly I just want to say how incredible you all are. When Dessy, Chris and I spoke about this page, it was a scary thing for them. This page meant that they would be exposing themselves and the battle they have on their hands right now. A battle that involves so much! Managing Doctors, managing medical procedures, appointments, good days, bad days, a home, keeping things as normal as they can for beautiful Nikaia and themselves.

    That is why all of you need to know how incredible you are. Because your support has lifted so much worry and uncertainty from some of the next step treatments that Des can pursue. Collectively all of you have just wrapped Des Chris and Nikaia in one big beautiful hug that they had no idea they could have from you all.

    Each week I will post updates for you so you understand where we are at. Currently Des is on oral Chemo treatments and is trying to get her GP to sign off on a course of action she wants to do involving a series of drugs that are no longer on the market.This is not easy and her and Chris have to convince a lot of her medical team to help her with this. So please send out the vibes people to get that team on board. Des and Chris have researched and this is the path they want to go, but of course it costs, Cancer treatments are really expensive so now you can see how incredible you all are. They were struggling to work out how to finance the next treatments and now because of you, they can now get moving on it.

    Des remains so calm and patient through all of this. I am in awe of her strength, her humor and her resolve to beat this. Chris is a Scottish Rock, he is so strong but remember he needs hugs too so if you see him wrap your arms around him, and Nikaia is the sun the moon and the stars for them both. She is an amazing kid dealing with this with understanding and patience just like her Mummy.

    So keep sending out the givealittle page to friends and whanau. We have a goal but by golly what a gift of love it is to see how everyone of you has responded.

    Lots of Love

    Glenda

    Picture is Nikaia and Ruby riding on Otaki Beach in March this year

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  • Thank you Thank you Thank you      6 June 2019
    Posted by: Glenda Tuaine
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    Words from Des:

    Thank you, Thank you, Thank you, one and all for all your support!! It’s been an emotional week we hadn’t expected such an amazing response and the whole experience has left us feeling hugely humbled - it has just reinforced our belief in the generosity and good will of people. Thank you from the bottom of our hearts! Through this process and because of this amazing Page, we have reconnected with a lot of people that we hadn’t been in touch with for a while, which has been fantastic for us.

    Yesterday we discussed some of the non-funded conventional treatments with our oncologist, now that it is a financially viable option. Because of all of you, it’s possible that we’ll proceed with Avastin with the next cycle of Etoposide.

    The metabolic pathway that I want to take was inspired after reading "How to starve cancer and not yourself " by Jane McLelland. Not a title I’d normally be drawn to, but I heard the author in an interview and connected with what she was saying, so we’re also investigating the metabolic research being done at the Care Oncology Clinic in the UK. The clinics research is very similar to what the book purports…..Fingers crossed!

    Our pictures were taken while walking Nico at our local beach – we hope you can make out the message!

    Huge love from Desrae, Chris, Nikaia and Nico xxxx

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