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Anaru Turei Gray - funding for the Big C

  • Hospice

      30 August 2019

    Hi all,

    I am lying here in a sofa bed in the middle of my two main men. A snoring Tama on one side and my Anaru breathing very shallowly and rattly on the other side.

    Anaru is under hospice care as of yesterday. His liver is failing. It has been enlarged and engulfed by those bloody tumours and there is very little healthy organ tissue left to help his body out. His feet and legs are very swollen, and his puku is very distended.

    His cheeky and affectionate side is still there - pouting out his lips and leaving them there until he's kissed and cupping a sneaky side boob!! The horrible reality is there, too, that it won't be long now until that side - all his sides - will be gone...

    I just wanted to take this opportunity to express to you my heartfelt thanks and eternal gratitude for your support. You are all so amazing!!

    Much love,

    The Grays.

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  • The latest happenings

      15 July 2019
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    Almost a month since our latest update and it has been a huge one!

    Anaru has overcome some nasty infections in his chest and another causing him to vomit bile.

    We have been absolutely overwhelmed by the support we have received! From mid-winter fundraisers, an awesome Zumba event, donations of kids toys, slices and yummy treats, freezer meals, kōha, and babysitting... amongst others!

    Anaru's amazing classmates have funded our bucket list trip to Te Wepu intrepid pods! Anaru's dream of having a fire under an outside bath, and our dream of tiny house living all rolled into one!

    A massive thanks to all that pop in and check up on us. The little notes we find make us cry with happiness. We feel truely loved and blessed.

    Anaru even took a brief trip to his Uncle's tangi. It was a photo taken there where I could see the yellow creep into his complexion.

    Most recently, he took a tumble down the stairs and ended up in hospital. His care team came to visit and their suggestion was to make/keep him comfortable with morphine.

    For those of you who know us, know that we don't want to go down like that. We are still fighting every day for Anaru to live!

    Thanks to your help and donations, we are continuing to have IV Vitamin C infusions and are working with the Doctor at the practice to create our own unfunded drug trial.

    Anaru will introduce 4x drugs into his regime that have been funded for other purpose (eg. Metformin for Diabetes) that have elementary studies conducted showing there is benefit for attacking cancer stem cells.

    Much love,

    The Grays xx

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  • Introducing Maddi

      17 June 2019

    We welcomed Maddi as newest member of the Gray-zy peeps at number 10.

    Maddi has the lucky(?) role to be Anaru's caregiver/side-kick who will get on his case about drinking water and taking his medication amongst other things. She will be with us from 8:30 am - 2:30 pm on Monday-Wednesday.

    Nau mai, Maddi! :-)

    Apologies in advance for all the pātero and any other noxious gasses you may encounter!

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  • Oncology appt

      4 June 2019
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    We have just finished up at our Oncology appointment. They have decided to discharge Anaru into the care of only the Palliative team.

    They aren't going to CT scan or colonoscope Anaru to see what's going on in his chest and/or hiscolon as they don't think us hearing further bad news at this stage will help. Confirmation of tumour growth and new tumours won't result in any further treatment, radiation, chemo, or surgery. They don't recommend doing the blood tests to monitor his cancer activity level (CEA) either.

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  • Oh shit!

      3 June 2019

    The bleeding is back. He had been without blood since the tumour in his colon got removed.

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  • Turning the corner from a rough road

      31 May 2019

    Things got a bit rough and hairy there for a while. Now things are definitely less hairy - the bro has shaved off all his hair!

    Anaru had developed strong pain on his liver side and couldn't sleep or lie on his right side. The nausea, vomiting and lethargy snuck back in, and we've had to up his meds. I needed to monitor him like a hawk to make sure he took them!

    I had a scary moment when the school called to tell me son was absent (when Anaru was supposed to be taking him). I called his phone, son answered and said he was sitting on the bed with Pāpā but he was too sick to take him to school and he wouldn't wake up. I asked him if he was snoring and Tama said no. I panicked. I thought history was repeating itself with Anaru and his Dad.... Fortunately, I had a friend get there quicker than I could and he was just really unwell and deeply sleeping. Whew!

    Anaru has already outlived all predictions the medical team have given him and as of 7 June, he will have outlived the national average for Stage 4 Bowel Cancer. I think a little celebration should be planned for that date.

    Much love,

    the Grays xxx

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  • IV Vit C trial

      24 April 2019
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    Vitamin C infusion trial this morning. Anaru will know in 2-3 days whether it is helping his energy levels. If he feels better and less tired we will continue the IVs.

    *Update 30.04* Energy for miles for more than 48 hours!! This means our new plan is to have 2x weekly IV infusions for 4 weeks then a week's break.

    The cost is $260 per session for 50g of Vit C. I need to learn how to do the infusion for Anaru to save $50 a session! Seriously.

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    • 22/05/2019 by Barbara

      Kia ora Anaru and Angela,

      I hope the energy giving effect of the infusions is continuing.

      You are in my thoughts

      Arohanui

      Barbara

    • 23/05/2019 by Angela Cameron (Gray)

      Hi Barb,

      It was going great! Heaps of energy and Anaru was going to the pool each morning, weaving on Thursday nights, even some cooking! The lovely Dr Vitamin has gone on a well deserved break until the 2nd week of June, so no IVs at the moment (no one else at the Practice can do the Vit V) Meanwhile, Anaru has caught a wee bug and is run down, keeps sweating, feeling a bit sore... Just exhausted this week.

      Roll on June! xx

  • Please read - REFUND PROCESS

      8 April 2019

    As you may be aware from the page updates, we have now found out that Anaru is not a candidate for Cetuximab. We would like to say a huge thank you to you all for the love and support so far.

    We are now contacting you with an appeal to support Anaru in a proposed change in the use of funds. We would appreciate it if funds could be used towards funding alternative treatments. There are so many options such as high-dose Vitamin C, lymphatic drainage, Essiac Tea, curcumin, turmeric, high alkaline water, probiotics, infrared saunas, coffee enemas, frankincense oil, juicing, colloidal silver, baking soda Trojan horses, milk thistle. We are currently looking at unfunded lymphatic drainage ($500 per month), vitamins/unfunded meds ($690 per month), and I have made an appt to start the IV Vit C and this is estimated at $1600 per month. Any extra funds will be used to support us at this difficult time.

    We understand that we created this page for the specific purpose of funding Cetuximab for the overall goal of longer life. That didn't go as expected. Should you wish to seek a refund for your donation in light of the change in circumstances, please contact the Givealittle helpdesk before close of business Monday 22nd April 2019, at helpdesk@givealittle.co.nz

    I believe keeping Anaru feeling well and keeping his head in good spirits will be the key to quality of life for as long as he is able.

    Aroha nui ki a koutou,

    The Grays xx

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  • Alternative therapies

      3 April 2019
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    Well, wasn't I a bit of a negative Nancy yesterday? Of course there's options! Of course there are alternative treatments! And they help!

    There's high-dose Vitamin C, lymphatic drainage, Essiac Tea, curcumin, turmeric, high alkaline water, probiotics, infrared saunas, coffee enemas, frankincense oil, juicing, colloidal silver, baking soda Trojan horses, milk thistle... ! This is us now whānau! Sourcing and jamming in all this goodness.

    We had created this page for a specific purpose of funding Cetuximab for the overall goal of longer life. That didn't go as expected. I believe keeping Anaru feeling well and keeping his head in good spirits will be the key to quality of life for as long as he is able.

    Aroha nui ki a koutou,

    The Grays xx

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  • Latest news: Cetuximab won't work for Anaru

      2 April 2019

    ⚠️⚠️ Our bubble of hope burst this morning. ⚠️⚠️

    ❌ We finally got Anaru’s tumour biopsy test results ❌.

    Anaru is not a candidate for Cetuximab 😞😞😞

    He doesn’t have the KRAS mutation in his tumours, so the medicine definitely won’t work. I think we are out of options.

    I don’t know what to do.

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  • The wait time

      25 March 2019

    It's week tomorrow and a 40yr old still waits to get his appointment time for the Private Oncology Specialist, "Private Jim".

    Also, it's a week tomorrow since we had our appt with the oncologist, "Public Jim" and Anaru decided to give his body a rest for two weeks (before resuming a previous chemo until we get approved for Cetuximab in the Private sector).

    In this time, Anaru has developed a ring of pain around his liver - approximately top of ribs height - that goes right around his front to his back. He wakes up yelling in pain about 5-6 times a night. When he has a big drink, I can see it sitting there in the ring of pain like it's not being digested. The Hospice Doctor on the Palliative Care team is supposed to be making a house call tomorrow for pain management .

    On a brighter note, genuine thanks to all for your support and Thanks for the black boy peaches surprise on the doorstep. He was really happy about them!

    With love,

    The Grays

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  • Fundraising

      19 March 2019

    For those of you who know my Anaru will be able to relate to this. I told him all of the fundraising ideas and asked him what idea we should start with first. His response?

    "Let's just raffle off some tītī buckets".

    Ummm... that wasn't even on of the options or ideas! Bloody typical Anaru!

    (P.S tickets to said raffle will be available soon)

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  • Oncology meeting

      19 March 2019
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    Today we had a review/planning meeting with Jim at Oncology. Very eerie walking past five armed Police officers with their big black machine guns. Volunteers in hi-vis vests and hospital security also seemed in higher attendance.

    CEA (Carcinoembryonic Antigen) Markers:

    The medical team performs this blood test on a protein in Anaru's blood to see how active his cancer tumours are in his system. Sometimes, this test can show the cancer is still active when other tests, such as the CT scan is showing that there is no growth.

    In Anaru's case, it gives an indication as to how quickly his cancer is growing and progressing. A rough guide is that a non-smoker would have a CEA level of 3 or less, and a smoker at 5 or less. Anaru's level at it's highest when he was not on any treatment was 1600. With treatment it went down to around 390 and then it jumped to 760 when the FOLFIRI chemo stopped working and latest result today... 870.

    As for the tumours, noticeable further growth in segments 2 and 7. In addtion to Segments 4 and 8, where the tumours have always been the largest. Segment 2/3 has already been surgically removed and grew back with 20+ lesions and some that have grown into big tumours.

    Yup, the news was not great.

    Anaru is having a two week break from chemo and they have agreed to re-try FOLFOX chemo while the Cetuximab planning continues. The biopsy of Anaru's tumour has been taken, but results were not on the system to discuss today.

    I will update when we know further.

    The Grays xx

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  • How the plan is progressing...

      17 March 2019

    We are just having time to go over all of the amazing help and information that has been thrown our way. Thank you all so much! In light of the Christchurch tragedy, we are wanting to stay at home and be with each other today so this makes time for Anaru and I to have "real talk".

    Fundraising and medical ideas have included:

    - Win The Hits "Pay off your mortgage" competition

    - Silent art auction

    - Hangi

    - Themed movie theater night

    - Pub quiz

    - Initiate payroll donation

    - Cash prize raffles

    - Housie/Bingo nights

    - Move to Australia where drug is funded

    - Buy drug from India and find someone to administer it here

    - Research Lonsurf the "last last option" cancer drug

    - Ask public hospital if they will open to giving Cetuximab that was purchased elsewhere

    - Fast for 30 days to attack cancer cells

    - Intravenous Vitamin C drug trial

    - Batons Up!

    - Trojan horse

    - Seek natural, herbal, pain relief.

    Heaps of stuff for us to look into and amazing ideas! Anaru was open to intermittent fasting but the mere suggestion of 30 day fasting... ! Ahahahaha :-) I wish I'd filmed that one.

    On our side, we have contacted my work's Health insurance and they may pay $10 000 toward drug costs if it's done through St George's Cancer Care and we have an approved specialist to recommend it, but can't be drugs from India. But, St. Geoge's may be able to use that Cetuximab from India and then the fee to administer the drug will range from $1300 - $1500 per round plus GST. Bugger! I totally didn't factor in tax.

    I've also been rejected from adding on to the mortgage (only been here two years on Saturday) and apparently a part-time admin worker with five dependants isn't a good financial risk! But, we have been able to drop the re-payment right back, which is $80 less per fortnight. Also, three finance companies have turned me down for a loan. Sigh!

    I'm applying to close Anaru's Kiwisaver. We used it all for the house deposit, but there is about $4000 left in it - yay for tax credits and initial kick starts!

    So - how are we looking (best case scenario)

    $53 800 goal, less

    10 000 Insurance

    4 000 Kiwisaver

    6482 Givealittle (Thank you!)

    860 Savings

    $32458 to go!

    We're so hopeful! Our oncologist appt is on Tuesday and referral to Private Oncologist is about three weeks away. Anaru's needs are important, but the Christchurch Tragedy is urgent. If you have anything spare, please donate to the families through the Victim Support page on Givealittle.

    Much love to all,

    The Grays.

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