Hey again!
As promised, the FB page is all go (thanks Kelly Batley!! 😘)
Here’s the link for any of you who want to follow but might not be current FB contacts with either of us:
https://www.facebook.com/groups/2115406925466895
Hope that works ok!? Will be shutting down the Give-a-Little page soon, so catch you on the other side!!
🩷
Hey everyone!🌸 A quick update to let you know Tom is doing okay, despite the ups & downs and unpredictability of this bloody disease. I can see him drawing strength from the absolute depths of himself when things get tough. His sense of humour is still intact too, even on the worst days and I just admire him so much for all of it. Just goes to show you can’t keep a good man down.
His last CT scan showed no cancer elsewhere in the body apart from the lung lesions we already knew about. And the more recent MRI shows the tumours are largely stable. The inflammation is widespread though, which is what sits behind most of the cognition, eyesight and balance issues. Dr Lao reckons the radiation from March/April is still doing it’s thing - holding off tumour growth for most parts and giving us the precious time we didn’t think we’d have this year. Bring on Christmas🎄and summer☀️!!
We’re signing off from Give-a-Little soon and starting up a private FaceBook page where we’ll post updates from time to time and we hope you’ll join us in sharing photos you’ve gathered - and stories - from over the years as friends and whanau to Tom, and us as a couple (almost 23 years!). Will post again here in the next few days with a link once set up and we’ll send invites out through our FB contacts too.
So a final chance to say a MASSIVE thanks again for everything you’ve done, donated, messages of support, the “kia kaha’s” and all the aroha; we’ve felt it all and appreciate every part of it ♥️
On the home front, Benji’s had a massive rugby season (and the Ross Brown tournament to come, whoop whoop!) and an absolute cracker basketball season (which seems to stretch on for months!). Couldn’t be prouder 🥰🏀🏉
And there’s always people to thank too….my in-laws Ken & Margie for quite literally *everything*, my brother-in-law Dave for being an all-round top bloke, Michelle & Debbie for working their magic, the Nielsens for the loan of the bach (and more), as always Leights & Fee and my sisters for their constant support, Troy & Duncan for uplifting ‘old times’ chats, Paul & Karen for the countless selfless acts, and all the girls who help to keep Julz sane on a daily basis. Thanks to those who bring kai and aroha ♥️ Thanks to Benji’s coaches - I’d be there amongst it myself if I could. To the parents of his mates; so grateful 🙏🏼 And for all the texts and calls from you all - I’m not too flash on talking or messaging lately but I love it that you check in from time to time. It’s been “a long time in between drinks” so to speak - will be really glad to see beyond these four walls again once the weather improves and my energy returns 🌈☀️
Still plans sitting to the side with that clinic in Thailand which we need to reinvigorate now that I can see the horizon again; will keep you posted on that.
Until then, take care of you & yours.
Arohanui 🫶🏼
Tom (& his very talented admin support 😘)
Hi Tom, great to hear such a positive update. We think of you often and are very glad to hear you are keeping up the good fight. 👍
Keep it up, look forward and enjoy.
Take care, hugs and positive thoughts 🤗
Karen and Murray, Richmond Farm Lodge.
It’s been a long time since I popped up to say hi. Hey 👋🏼 Still here.
So…after my not-so-great prognosis from a local oncologist in December, we set about to enjoy Christmas, New Year and the remainder of summer. In late February though I thought I’d better get my arse into gear if I was determined to be around longer than the ‘just a few months’ they’d given me. By March we were directly in touch with the two Auckland oncology services I talked about in my last update, and a radiation oncologist up there agreed to give a second round of radiation a go (double the dose, over two weeks this time) in late March…..and….fast forward 5 months!! Knocked me around a fair bit and most days are still a struggle but the brain MRI results speak for themselves - the tumours have reduced in size and I’ve been given the gift of more time. I feel stronger for it too. The more recent body CT scan shows there is no cancer in the rest of my body apart from the two lung lesions we already knew about. So all in all it’s SUCH good news!! 😄💪🏽👏🏼 Now just have to kick the remainder of the radiation side effects (🤞🏼) and sort out some meds that are also keeping me down, and look forward to another Christmas!!!
PS the pic attached, in case you’re wondering, is the mask the radiation team mould for you to keep you in position during treatment. Julz didn’t want to bring it home for some reason….🤷🏽
It seems so long ago that the rain and wind hasn’t dominated our forecast. And it feels like I’ve been living under a cloud or two myself, interrupted by breaks in the weather for a super chilled Xmas day, the quietest New Year for a while, some sunny surf lifesaving carnivals and a fantastic Summer Concert in Taupo last weekend. So it’s far from gloomy around here…
We had my recently married step son Luke and his beautiful bride Meghan call in on their way back to Hawaii after their Queenstown honeymoon. I was supposed to be their wedding celebrant in Arizona back in November last year but my treatment didn’t allow me to fly so it was really good to catch up with both of them.
We’re also celebrating the news that my niece Chanel is having her first child! While my sisters, brother and I are the connection to their past ancestors she is our connection to the future of our whanau. Congrats and thank you Nelly x
We also received a special visit from an English friend Bails (yes he’s a cricketer) and his beautiful new bride Hannah and with them the news they’re expecting a new addition too. It’s been 18 years since Bails first played on NZ soil as a UK Exchange player and I’m impressed with who he’s become. That goes for all of the English Exchange players my brother arranged and the town of Otorohanga supported. They continue to support me from other side of the world and have been great mates for me too -I’m incredibly thankful guys.
Being surrounded by new growth, new beginnings and the zest for life is so inspiring.
Thank you to the many people who took time out from their well-earned holidays to call in for green tea or coffee and share some Kai and korero. Thank you to my fishermen and gardening friends for keeping us up with the fresh veges, fish and other delicacies. When I was young my uncles and aunties took me to the tide to gather kaimoana for the whanau when I first could walk, so not being able to drive to the coast, fish, surf or dive is harder than I thought when the weather is good and the sea is calling.
Thank you to those that continue to contribute my give a little page, special mention to Benji’s friends Hadley and Levi who are forgoing birthday presents from their guests to donate to support my treatment. Words escape me boys. Arohanui.
On the health side of things it’s been challenging. Oncology have said goodbye and best wishes to us and are leaving things up to Hospice. Hospice are a brilliant team though and so far Ive received much better attention from them. However it’s disconcerting that I no longer have upcoming scans / changes to treatment plans to possibly reduce the tumours etc. Scans prior to Christmas showed continued growth in the brain tumours and continued reduction in the lungs. If Oncology is/has done the best they can for me then I thank them, but there’s much to be improved in that system and it’s clear that NZ is way behind in our treatments of cancer. The decision to leave the “slow growing” lung tumours untreated for three years gave the cancer a pathway to my brain.
Despite these developments our team are now gathering information about a targeted radiation cancer service in Auckland, Canopy cancer care in Tauranga, a neurology review from the USA and integrative cancer therapy based in Thailand - I’ll let you know how we get on and how we choose to go from here.
I’ll finish on a positive note… Julz Benji and I attended the Summer Concert in Taupo over Waitangi weekend. The people of Taupo spoiled me, especially Julz’s long time friend Fiona – she arranged a special meet & greet for me with Dave Gleeson, lead singer of The Angels, and the next day I got a signed album of ZZ Top’s ‘Eliminator’ on LP! Wow. Two amazingly kind gestures that made me feel super special.
So still feeling the love – you guys are the gift that just keeps giving, and I (we) couldn’t be more humbled and grateful. Thank you.
What a night! WHAT. A. NIGHT!!
I hope you all enjoyed yourselves at the Black Tie Event - I thought it was EPIC👌😁…except for the aircon perhaps 😏
Besides meeting you (I tried to see as many as you as I could before heading home around 10pm) I loved the whole evening - the music, food and auctions - super cool. There were some superheroes amongst the organisers and setup support crew. I know who are you are🥰🤛🏽💋thank you🙏🏽
Fee & Leights Parsons, so much love for you two. This event only came together due to your blood, sweat and tears. You’re both such incredible people.
The bands & DJ, those helping with set up Friday (& pack up Saturday), our Auctioneer and all the sponsors need special mention. Nga mihi nui.
Ashtrin Haimona….Nga mihi aroha e te Whanaunga. You poured heart and soul into this event my bro, for which we will be forever grateful.
I’ll leave the final tally to the organisers to update us all on but, whatever it is,
its massively appreciated and I wanted to thank you all for being part of that!!! I only hope we can do it all justice.
I was in ok shape the days leading up to and following the Event considering my brain was stretched during the evening; though apologies if I lost track while speaking with you, and the slurred speech is so frustrating 😫
Probably due to all the excitement (aka overdoing it) though, the seizures have jumped up a notch, having three over the weekend. Benji was with me for a small one on Sunday but as always he was a bloody trooper, though not something I wanted him to ever experience of course. Michelle pumped 120g of Vit C into me on Sunday which has helped a lot.
Julie has been working with Oncology this week to seek some Neurology advice on those and Hospice support is also now underway. I’m also remaining on a high dose of the steroid to keep inflammation around the tumours in check. Whew she is incredible🌺💋
Benji and I, and his Uncle Dave Dixon got up extra early to watch the Football World Cup final yesterday morning…. and what a game! But it wasn’t nearly as good as the Black Tie Event😁😁😁
Thank you for the enormous goodwill and generosity you have given to me and my whanau.
Always grateful,
Tom
Kia ora Koutou
I’m pretty excited that our Black Tie Event is only a few days away! MAD Media has very kindly put a big billboard up in the Main Street in town & Ash has been on the radio about it so I thought I better do my bit too and post a quick update from me as we approach our grande night.
A stunning effort is ongoing to prepare for it…the organisers are pulling together to create the whole event - venue, tickets, online auctions, raffles, food, photos, band, DJ etc - all essential ingredients for a fantastic Friday night out! I’m really looking forward to seeing you all there.
On the health front unfortunately I have been experiencing increased inflammation around the tumours which has caused me headaches, low energy, altered vision and speech impairment. But the biggest dent in my self belief came when I fell off my bike on Molesworth St going to the shop. The bike is now parked up, beside my car. I should have listened to Julie the first two times I fell off my bike aye 🙃
Subsequently the Oncologist has increased my steroids to reduce the inflammation and the Dr has increased one of the doses of Vit C. I sat for over 4 hours in Healthspace to take 120g of Vitamin C intravenously last week. Next CT Scan results are this Thursday. Not sure how that’ll go but we’re not giving up anytime soon I can tell you that!
And surprisingly renal cell cancer popped up in a form of a lump on the outside of my lip! It grew quite quick too but expertly taken care of by Dr Matthew Allen. Said he’s never come across that before; trust me to be one for the books!
And my hair is growing!! Hooray, no more Mohawk for me.
On the home front Benji is wrapping up primary school in two days; the Central School community has been such a big part of our lives for the past six years and a massive support to Benji, and to us as a whanau this year especially that we’re really going to miss everyone associated with the School - just good, good people. Benji’s also been providing some much needed entertainment with Peringa Futsal, Central Cricket and Fitzroy Surf Lifesaving - he had some pretty successful seasons too! All of that’s taking a bit of a break for a few weeks now though…so SKY Sport it is (much to Julz’s dismay) 🤣
What else….oh, special shout out to my brother for being selected for the NZ Over 40 Cricket Team - very proud!!!
Think that’s enough from me. Thanks again to everyone - the list of “thank you’s” is getting really long now. See you on Friday!
Master of the Double Vitamin C infusions
Kia ora Koutou
I’m sorry I have taken awhile to update you all on our progress recently- it’s been such a busy hive of fundraising activity, Vit C infusions, oncology consults, and visits from friends and whanau.
The latest thing to tell you is that my preliminary results of a Chest X-ray last week were looking pretty good… after almost doubling in size between Dec and July this year, there has been no obvious growth in the lung lesions over the last four months! Still waiting for the formal report but feeling pretty encouraged by this🙏🏽💪🏼 So, with no new tumour growth in my brain or my lungs since we started the combo of conventional and alternative treatments we are going extra hard at it by raising the level of Vitamin C; in the last couple of weeks I’ve gone up to 90gms of Vit C, 3 times a week. With my strength and fitness returning though - in typical fashion, Julz would say - I *might* be overdoing it slightly 😬 which seems to be triggering more seizures lately 😟 so the anti seizure meds are having to be increased as a result too. With two seizures this week alone we’ve been given a time to head back up to the hospital on Monday to talk that through. All in all it’s positive progress though and apart from that little setback I’m feeling a heck of a lot better than I was in August-September.
In late Oct Kelly and her dedicated team pumped out a mammoth Community Garage Sale, raising almost $5000 through sheer hard slog and team work. Bloody amazing to see who was involved, and I really appreciate everyone’s effort - beforehand, on the day and afterwards too. Thank you. Hospice will be feeling pretty grateful as well as all the donated gear that didn’t sell was collected by them, to go directly towards the support they give to our community. And Shona raised $1000 through her Beautea Products and Services as well - outstanding! Congratulations to Fran Jones for winning the raffle 😊 And a shout out to my cousin Shane and his wife Jamie who are running regular Lotto fundraisers amongst their friends and whanau.
On the home front I’m lucky enough to have had a steady stream of my favourite foods dropped around by some of my favourite people. Fish heads, watercress, and fried bread is what we lived on when I was growing up so it’s bought back what’s really important. My Mum’s parents had 12 children and there were 70 of us grandkids. When we were growing up we didn’t have much - bare feet, snotty noses, hand-me-downs…. and each other. All of us older kids looked after the younger ones, and although we don’t see each other often it’s never been clearer to me that the love is still strong between us and time or distance doesn’t change that.
Anyway, feeling grateful, positive and determined we’re on the right track and that everyone’s got our back. Nice to have a Village 🙏🏽
Arohanui
Tom
(PS here’s a pic of Benji ‘helping’ set up on the night before the Garage Saie - love that kid!!!)
This Black Tie Event fundraiser will be the event of the year. Expect to experience an amazing night of entertainment, food, the great auction, dresses, style and live music.
The function room at the New Plymouth Club will host us on Friday the 16th of December from 6pm until midnight. 55 Gill Street, New Plymouth 4310
Here is the important reason why you need to come. 100% of proceeds raised from the night will be going directly towards the expensive treatment costs for Tom Parsons in his current battle with brain cancer.
Whānau and friends are hosting and organising this event and much work and commitment has been put into ensuring this is the night of the year. If you want to be part of an awesome occasion, If you need an end of year staff or work do, if you need an awesome night of dressing up and dancing, if you want great entertainment and company…this night is for you!
The line up for music includes the local band “Thoze Guyz” and DJ Lukie who are guaranteed to keep the dance floor full all night. The evening will kick off at 6pm with happy hour and professional photography by our awesome photographers. At 7pm tables will be called for the buffet dinner. At 8pm you will have the opportunity to participate in the Great Auction and the raffles with some amazing items up for grabs. With the auction complete, local legends “Thoze Guys” and DJ Lukie will kick into full gear and bring us home until midnight.
Please get in quick. Tickets are limited due to the venue capacity and this event is expected to sell out. Tables of 8 or 10 are available but limited. Individual tickets available if you prefer.
To purchase your ticket or table ph. Ph. 027 305 8630 or email feehayes77@gmail.com
Tickets are $100 each
Table of 8 $800
Table of 10 $1000
Check out this very generous fundraiser from Shona at Beautea, 575B Devon Street East, New Plymouth.
She has some limited offers and a raffle - ALL funds will go straight to Tom's Fund!
Get in touch ASAP with Beautea direct as they wont last long!
💌 KOHA MASSAGE MONDAY - OCTOBER 31ST ONLY
45 minute massages with Shona.
Pay what you can, or want, but remember the cause.
Only a few spots available.
Message or call to book.
No online bookings sorry.
(06)7588293
💚 TREATMENT PACKAGE SPECIAL - $100
Package includes:
Foot soak & sugar scrub
30 Minute Massage
Petite Facial
Celluma LED - facial add on
Total package value of $195.00!
Approx. 1 hour & 45minutes of pampering.
Limited number available!
Book online, call or message to secure your spot or purchase a voucher to gift or use yourself at a later date.
https://www.beautea.co.nz/book-online
🎁 PAMPER PACK RAFFLE - $2 tickets
Prize includes:
1 x Special Treatment Package Voucher(above package) and some of our favorite retail products to pamper the whole body!
Valued over $400!
Check out their facebook page https://www.facebook.com/beautea
Having a clear out over the school holidays and don't know what to do with all those spare clothes, toys, books & household items? Box them up & drop to Central School Hall Friday 28th October 5pm - 6pm or phone / text 0274323636 to arrange early drop off / collection. All funds raised to Support Tom Parsons Cancer Treatment 🙂
Hey Everyone
Another eventful week with 3 Vit C infusions, heaps of oxygen chamber time, an Oncology consult, a chest X-ray, alongside some improving fitness levels and growing appetite, all of which unfortunately was bookended on Friday morning with a short seizure😏 Although my confidence was dented by the seizure I’m counting the number of positives from last week and moving on…
Most encouraging was the Oncologist visit last Wed where we talked about the results of my latest scan. It’s showed that there had been “subtle improvement of cerebral metastasis as evidenced by lesional calcification and reduced vasogenic oedema” - which in layman’s terms means we’ve stopped the brain tumour growths💪🏼😁❤️❤️ No sign of any new tumours either!! We were really hoping for a result like this after the first 12 rounds/weeks fighting this ngānara.
With so much having to change over the last 3 months - in terms of new meds, battling some pretty brutal side effects of the conventional meds, adding more meds to counter those and just feeling really confused and freaked out about all of it, it was a bit of a relief (almost) to hear that the oncology team are pleased with how things are going and that nothing changes in terms of the plan for at least for the next month. At the Nov oncology visit they’ll also be looking to see a reduction in the lesion on my right lung too, all going well 🤞🏽
We’re feeling pretty buoyant right now.
Thank you very much to those who have added to my Givealittle during the week; the complimentary supplements and off-label treatments are literally only happening because of all this amazing help. It’s also been great catching up with those of you who have been in touch directly, either over the phone or in person. Certainly feeling the aroha.
That’s it for now I think. Just thanks heaps, will update again soon.
Aroha tino nui,
Tom
Hey Tom! That's great news Man. Lots of Peace and Love from Cornwall!! XxX
Please accept my sincere thanks for the kind words and MINDBLOWING generosity you have shown me & my whanau this week. It is so humbling.
We were really hesitant to reveal the severity of my health situation for quite a few months. Firstly, we wanted to protect Benji for as long as possible. We also wanted to deal with it by ourselves for as long as we could and to carry on as normally as we could. But that gets pretty hard. Thanks Kelly (& Julia) for encouraging us to ask for help. Having shared my situation with everyone now I feel so much stronger - and even more determined - to beat this. Messages of love and encouragement have been really uplifting, so thank you 🙏🏽
A bit of an update about my treatment: have had two Vitamin C infusions this week and another booked in for the weekend. Also caught up with one of my doctors, and got a preconsult MRI & bloods taken yesterday all ready for my oncology team consult next week. This one’s a big and nervously awaited one….any positive results of the radiation, the conventional meds and all my complimentary alternative treatment plan (the one you guys have helped out with) will reveal itself then. Nervous ain’t even the word. Cross everything you got in my behalf that the tumours have stabilised or, even better, reduced 🤞🏽🤞🏽Will post an update in another week or so.
Thanks again for supporting me with the meds and supplements I need, for the messages, visits and phone calls. Feeling pretty lucky in lots of ways.
Aroha tino nui,
Tom
