https://www.jemimaswish.com/blog daily 0.75 2024-08-06 https://www.jemimaswish.com/blog/wellington-east-jwg-volunteer-award-2023 monthly 0.5 2024-08-06 https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/dc370ab4-0428-48f6-8c12-96c0c94c2e92/IMG-20231114-WA0005.jpg blog - WEGC, JWG Volunteer Award - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.jemimaswish.com/blog/why-are-dying-kids-reliant-on-charity monthly 0.5 2024-08-06 https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/8dfeefef-2288-4dfe-9c91-624222cd2850/RK+Post_Bereaved+family+couch_Sept+17+2023.png blog - Why are dying kids reliant on charity? - Make it stand out Siliana Rogoyawa died of a brain tumour in 2021, aged 9. Specialist palliative care help allowed her parents Nerina and Isimeli to bring her home for her last days. https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/6d63c808-a2b2-435e-82b6-90a845f391c4/RK+Post_Wood+family+with+dog+in+the+woods_Sept+17+2023.png blog - Why are dying kids reliant on charity? - Make it stand out Michelle and Warrick Wood had amazing care from Starship Hospital’s paediatric palliative care team and believe parents nationwide should have the same access to expert 24/7 help. https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/d64a9948-fd1f-45fc-882f-3928323dfd9e/RK+Post_Evie+in+chair_Sept+17+2023.png blog - Why are dying kids reliant on charity? - Make it stand out Evie was born with a rare chromosomal condition, and died in 2010. https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/17361f40-955f-49ec-80b3-9d5b83d62a68/RK+Post_Frankie+Wood+with+toys_Sept+17+2023.png blog - Why are dying kids reliant on charity? - Make it stand out Michelle and Warrick Wood lost their 3-year-old son Frankie to brain cancer in April 2021. https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/7523d4c5-a22f-44d2-a2c0-efb8db9a9c8a/RK+Post_Bereaved+family+bed_Sept+17+2023.png blog - Why are dying kids reliant on charity? - Make it stand out “We were lost, as parents,“ says Nerina. Having specialists on call helped them find a way through. https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/736d6c79-0f71-427e-99cf-5923472d2345/RK+Post_Bereaved+all+family+round+bed_Sept+17+2023.png blog - Why are dying kids reliant on charity? - Make it stand out The palliative care team not only helped keep Siliana comfortable, they also supported the couple’s four other children. https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/bb48c468-e147-4c76-9b83-e59f5dfd57ac/RK+Post_Rachel+Callender_Sept+17+2023.png blog - Why are dying kids reliant on charity? - Make it stand out When Rachel Callander’s 2-year-old daughter Evie died in Timaru in 2010, she received no palliative care support. https://www.jemimaswish.com/blog/press-release-dompost-1-jembot monthly 0.5 2024-08-06 https://www.jemimaswish.com/blog/radio-early-edition monthly 0.5 2024-08-06 https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/ae26174c-bc97-473e-9da0-6c6553ca35fb/Screen+Shot+2022-10-06+at+11.46.48+PM.png blog - Jem-Bot starts work - Early Edition - Make it stand out A very special robot will begin operating this week to help cure brain cancer. Wellington teenager Jemima Gazley raised money for the 'JEM-Bot' as she was dying from an aggressive brain tumour late last year. It will eliminate human error and speed up the work of testing drugs on DMG / DIPG tumours by 400 times. Jemima's dad Oliver Gazley joined Early Edition. https://www.jemimaswish.com/blog/press-release-nz-herald-3 monthly 0.5 2022-10-24 https://www.jemimaswish.com/blog/press-newcastle-herald-2022 monthly 0.5 2022-10-24 https://www.jemimaswish.com/blog/press-release-dompost monthly 0.5 2022-10-24 https://www.jemimaswish.com/blog/award-massey-university monthly 0.5 2022-10-24 https://www.jemimaswish.com/blog/nzs-quote-of-the-2021-finalists-announced monthly 0.5 2022-02-15 https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/48b902ba-4928-42ba-8784-09162ca93d3e/IMG_0005.jpg blog - Nomination: Massey University - The top ten "It is a challenge in high-density areas for people to get outside and spread their legs." Covid-19 response minister Chris Hipkins' slip of the tongue. "He is about as exciting as the Taihape public toilets." Commentator Mike Williams on Christopher Luxon. "It was like a half-sucked Oddfellow in the sky." TV presenter Mark Richardson describing the first blood moon lunar eclipse in 40 years. "If I can't be cured, I'll be the cure." Jemima Gazley on why she crowd-funded for research on the cancer that later ended her life. "That was a bed-time fail." Jacinda Ardern after daughter Neve interrupts her Facebook live. "We've got an economy that's running on a sugar hit." David Seymour on how borrowed money increases New Zealand's gross domestic product. "Does anyone know if the tinny house in Aro will be open during level 4?" (Name withheld) post on community Facebook page Vic Deals. Wellington District Police hilariously responded with the eyes emoji, showing the post had not gone unnoticed. "Who is going to do a Berocca in the morning?" MP Anna Lorck in Parliament. "Hey Judith, it's not that bad. Raise an eyebrow, to show you're glad." Jono and Ben's song to Judith Collins. "No, it's a f***ing goat." Toddler mimics her mum's description of a goat in her garden. https://www.jemimaswish.com/blog/jemima-nz-herald-hero-2021 monthly 0.5 2022-02-15 https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/3296aebd-57d1-4af0-91c0-b338a0739245/JW+blog+jemima+our+hero.png blog - Press / Award: NZ Herald Wellington teenager Jemima Gazley is the New Zealand Herald's 2021 Our Heroes award winner for her selfless campaign for research and funding into brain cancer, in the final weeks she was succumbing to the disease. Raising more than successive New Zealand governments have invested in brain cancer across her lifetime, she also donated her own brain tumours to researchers in the hope of carving an easier path for the next child given the death sentence of DIPG. Herald editors unanimously picked her from a strong line-up of candidates, featured below. But Jemima Gazley herself would find the award "very curious" - especially as she began the year as a regular, healthy teenage girl. In her family Jemima brought the laughs and "lifted everyone's game". But a shock diagnosis of terminal cancer at 14 was the spark that ignited Jemima's full enlightenment. She was not defined by cancer. But her response to it was "mind-blowing". https://www.jemimaswish.com/blog/jemimagazley-obituary monthly 0.5 2021-12-23 https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/b023a472-686a-447a-bbb2-c1447d6fc868/JW+blog_obituary.png blog - Press: Obituary, DomPost It was a terrible privilege to be there as she took her last breaths - they were there when she took her first. But Ray and Oliver Gazley knew Jemima had nailed it in her short time on the planet. Her beautifully ordinary life became an extraordinary one when, having accepted her own terminal cancer diagnosis, she decided to be part of the cure if she couldn’t be cured herself. In her final two weeks she crowdfunded more than $725,000 for researchers looking for a cure and better treatment for the cancer that ended her life just nine months after diagnosis. Perhaps even more importantly, she donated her brain tumour and tissue to the cause. “If they can’t take it out while I’m alive, Mum, they can take it out when I'm dead,” she had said. Jemima died knowing she had done something pretty big. Her life had changed on the turn of a dime. https://www.jemimaswish.com/blog/press-release-nz-herald-2 monthly 0.5 2022-02-15 https://www.jemimaswish.com/blog/brain-tumour-awareness-week-jemima-praised monthly 0.5 2022-02-15 https://www.jemimaswish.com/blog/5xivnovd5yvz460n2wg8g6nodgskdg monthly 0.5 2022-02-15 https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/f90eb0dd-6938-40b8-be51-55ba0bdabe2e/Matt+Dun+with+cheque.jpeg blog - Press Release: Maitland Mercury - Associate Professor Dun accepted a cheque just short of $700,000 in New Zealand dollars on Friday morning to support his research into Diffuse Intrinsic Pontine Glioma (DIPG) - the cancer that claimed Jemima's life. But that figure did not include a last minute donation of $50,000 from an anonymous New Zealand donor to RUN DIPG on Thursday. https://www.jemimaswish.com/blog/press-release-uk-daily-mail monthly 0.5 2022-02-15 https://www.jemimaswish.com/blog/press-release-stuff-digital-1 monthly 0.5 2022-02-15 https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/d481d0fc-1522-4e6e-a2ba-dbb6c8de0b6c/Karen+OLeary+WP.jpeg blog - Press Release: Stuff (digital) - The 24-hour Wellington Paranormal memorabilia auction, which closed at 3pm on Friday, generated an additional $15,648. When she set off on the fundraising journey three weeks ago, they hoped they might get to $20,000. “I think she’d been pretty mind-blown to be honest. None of us expected it to get to where it was,” Oliver Gazley said. Jemima also donated her brain tissue to the researchers, which epitomised her willingness to give everything for the cause. https://www.jemimaswish.com/blog/teenagedream monthly 0.5 2021-12-23 https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/18cd45dc-b141-48c6-bb8e-dd73a14585c1/JW+blog_teenage+dream_dr+matt+dunn.jpg blog - Press: Newcastle Herald - But even as her loved ones prayed for a miracle, the 15-year-old girl from Wellington was making plans to donate her brain tissue to the cause. She dreamed her gift would help Associate Professor Matt Dun and his team unlock the clues to find a cure for DIPG. That by being part of the answer, the victim may ultimately become the victor. "My wife said it beautifully in her eulogy - we prayed for a cure for Jemima, but per haps, Jemima is the cure," her father, Oliver Gazley, said. It was in February that Jemima, then 14, woke up with a headache, feeling dizzy. Nausea followed, and her parents took her to hospital when they noticed her face seemed slightly off balance. https://www.jemimaswish.com/blog/wellington-paranormal-auction monthly 0.5 2022-02-15 https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/e6e78469-2e9b-403a-a661-bc63acde60bc/JW+blog+wellington+paranormal+jersey+joke.png blog - Press / Promo: NZ Herald Fifteen-year-old Jemima Gazley passed away from terminal brain cancer last week, after spending her last few weeks alive fundraising for research and a cure into her disease. Closing tomorrow, her Give A Little page now sits at $615,000 – but the team behind TV comedy show Wellington Paranormal are hoping to give it one final push. Launching at 3pm and lasting 24 hours, an international auction is listing items from the police investigation mockumentary – including Minogue and O'Leary's taser, Minogue's police patch and a signed script for the very first episode. On offer is also a virtual meeting with the Paranormal Unit team, who will give their expert advice on any paranormal experiences the lucky bidder is facing. https://www.jemimaswish.com/blog/press-obituary-nz-herald monthly 0.5 2022-02-15 https://www.jemimaswish.com/blog/press-release-nz-herald-1 monthly 0.5 2022-02-15 https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/03af8adc-568b-4fcb-a33f-4c10cd35b68e/Matt+Dun_in+lab+2.jpeg blog - Press Release: NZ Herald - On Friday her father Oliver told the Herald her brain and stem cell line arrived at Newcastle University "in perfect condition. The research team are ecstatic. She just keeps on giving." Dun told the Herald brain tissue donations are absolutely crucial to his work. "Without donations from children who are diagnosed with DIPG or passing away from, we cannot continue to do our research. Brain tissue is imperative to try and unlock some of the clues of this most horrific and devastating form of childhood cancer." For him, the fight for a cure is personal. In 2019, his 4-year-old daughter Josie died from DIPG. https://www.jemimaswish.com/blog/press-release-stuff-digital monthly 0.5 2022-02-15 https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/c94f69ab-1e34-4c2d-8b18-78872987767c/Screen+Shot+2022-02-16+at+2.55.39+AM.png blog - Press Release: Stuff (digital) - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.jemimaswish.com/blog/press-release-autofile-nz monthly 0.5 2022-02-15 https://www.jemimaswish.com/blog/press-release-nz-herald monthly 0.5 2022-02-15 https://www.jemimaswish.com/blog/press-interview-nz-herald-matt-dun monthly 0.5 2022-02-15 https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/c0b36f6a-adb1-46f7-91de-012c78814e9e/Matt+Dun_in+lab+1.jpeg blog - Press Interview: NZ Herald - Diagnosed with inoperable stage 4 brain cancer in February, 15-year-old Jemima Gazley decided to start a Givealittle page last weekend to raise funds for the research of Dr Matt Dun, who is working towards a better future for children with the disease. Jemima wanted the money to be a "legacy of her work on earth", and with one day to go the fund totalled more than $285,000. https://www.jemimaswish.com/blog/wellington-teenager-raises-thousands-for-cancer-research monthly 0.5 2022-02-15 https://www.jemimaswish.com/blog/jemimas-selfless-campaign monthly 0.5 2022-02-15 https://www.jemimaswish.com/blog/jemima-leads-with-kindness-and-bravery monthly 0.5 2022-02-15 https://www.jemimaswish.com/blog/givealittle monthly 0.5 2022-02-15 https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/372fb569-ca50-43bf-9ea5-b6e27ba3501c/JW+blog_gavealittle.png blog - Jemima’s Wish Givealittle Jemima went from being a regular teenager on Monday, to having a headache on Tuesday, then vomiting on Wednesday — by the end of the week, she was in hospital, diagnosed with a Stage 4 brain cancer. Because of the tumours' location in the brainstem, and growth like a spiderweb (not a solid tumour) the cancer is inoperable and incurable. They don't know why it happens, but the result is consistently 'the worst' for every kid who is unlucky enough to get it. Jem has fought hard to remain stable. She endured 30 shots (6 weeks) of radiation in an attempt to knock back the tumours' growth, we imported a first-of-kind chemotherapy from Germany, she went to Auckland every 3 weeks for anti-cancer IV infusions, took CBD and THC oils (this part not entirely unpleasant) amongst so many other pokes, tests, scans, numerous hospital clinics and necessary drugs. Sadly, these medicines are no longer working as well as they did, and the cancer has started growing again. So we're hoping to make some of her dreams a reality, and here's one of them... https://www.jemimaswish.com/blog/tag/Canteen monthly 0.5 https://www.jemimaswish.com/blog/tag/Give+A+Little monthly 0.5 https://www.jemimaswish.com/blog/tag/Fundraising monthly 0.5 https://www.jemimaswish.com/blog/tag/Oliver+Gazley monthly 0.5 https://www.jemimaswish.com/blog/tag/Legacy monthly 0.5 https://www.jemimaswish.com/blog/tag/Matt+Dun monthly 0.5 https://www.jemimaswish.com/blog/tag/Radio monthly 0.5 https://www.jemimaswish.com/blog/tag/Letter+to+the+editor monthly 0.5 https://www.jemimaswish.com/blog/tag/Phoenix+Football monthly 0.5 https://www.jemimaswish.com/blog/tag/Jemimas+WIsh monthly 0.5 https://www.jemimaswish.com/blog/tag/NZ+Herald monthly 0.5 https://www.jemimaswish.com/blog/tag/Newcastle+Herald monthly 0.5 https://www.jemimaswish.com/blog/tag/Obituary monthly 0.5 https://www.jemimaswish.com/blog/tag/DomPost monthly 0.5 https://www.jemimaswish.com/blog/tag/UK+Mail monthly 0.5 https://www.jemimaswish.com/blog/tag/Award monthly 0.5 https://www.jemimaswish.com/blog/tag/Brain+Tumour+Support+NZ monthly 0.5 https://www.jemimaswish.com/blog/tag/Nomination monthly 0.5 https://www.jemimaswish.com/blog/tag/Stuff monthly 0.5 https://www.jemimaswish.com/blog/tag/Press monthly 0.5 https://www.jemimaswish.com/about daily 0.75 2024-08-06 https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/3619ae68-0540-413e-810f-4827b31ab011/JW+homepage+image+colour+two.png About Jemima was “surprised to be shoulder tapped” on 11 February 2021. She went from “healthy as a horse” to pretty sick. In her case, pretty sick was dire and deteriorating by the hour. Once stabilised and diagnosed by MRI and stereotactic biopsy in Christchurch Hospital; we were forced to climb the DIPG mountain together. A harrowing journey where the end is a fait accompli, but we woke up each day; even in the knowing of the diagnosis, to make the most of it; and laugh, and get out there, and hustle and live — because this enemy doesn’t sleep. While hurtling down the other side of the ‘inoperable’, ‘incurable’ and ‘untreatable’ mountain, Jemima did something amazing. A supernova, burning at its brightest — she made a wish to be part of a cure so other kids wouldn’t have to face the terminal diagnosis of DIPG in the future. Jem raised $696,420 through her Give A Little campaign, and donated the funds, along with her brain tumour, tissue and brain stem to Dr. Matt Dun in Newcastle, Australia. She hoped that her contributions would lead to a treatment pathway and eventually a cure to DIPG. Welcome to Jemima’s Wish. https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/3222fdae-4f67-4db1-ab56-bc76c865f886/JW+pumpkin+cupcake.png About In the absence of an effective standard of care, the advice to ‘go home and make memories’ (actual words said by doctors at diagnosis) is inadequate on all levels, and of equal insult to parents. I generally refuse to use stock photography for all the reasons. I’d rather profile Jem’s cat, Pumpkin (@pumk1nator) than a ubiquitous stack of medical papers with a stethoscope draped over them. Please, enough with that. The medical descriptions and terms in this website I’ve borrowed from reputable sources and minced into new paragraphs for SEO purposes while retaining the facts. At this point, it would seem natural to invite you to enjoy the site. But I’m not sure DIPG can be that sort of story. Enjoy Jemima’s Incredible Journey instead — as best coined by Piera McArthur; ‘as she leaps into the radiance of her new glory’. Ray x https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/8e27ceb2-dd83-48a9-80c5-23a6b1f02026/JW+About_ray+and+jem_sleeping.png About A note from me: Ray. I’m Jemima’s Mum, trustee of Jemima’s Wish and author of this website. Jemima was an amazing teenager who didn’t deserve this. None of the kids who get DIPG do. Today, in the aftermath — I’m in grief and residual shock and a near equal measure of pride and pure admiration for what my girl achieved with extraordinary odds stacked against her. What an honour it was to meet the soul of my daughter — all human ego dissolved. Evolved and golden for 8 months on earth. What an inspirational woman she became. What a heartache I’m left with to have lost her. Not if, but when you hear my hurt, sarcastic, vulnerable voice come through in my writing — please know, I’m OK with being all these fragile and furious things, all at once. It just is. I accept it to be a result of walking through this absolutely senseless fucking fire called DIPG. https://www.jemimaswish.com/dipg daily 0.75 2024-11-17 https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/f8ae9e59-8920-45a5-a7b9-074fa9fd2a76/DIPG+cells.jpg https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/e118fb28-bf9d-4ff2-b67d-1279d90e8f34/IMG_3737.JPG https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/cfeee412-5f51-48d2-ac57-6e032d3e7f3e/RK+PPC+NZ_logo_white_2024.png https://www.jemimaswish.com/contact daily 0.75 2024-08-08 https://www.jemimaswish.com/donate daily 0.75 2022-10-06 https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/8ca1720f-af65-44b7-b7f7-a1cfdc955315/JW+Dr+Matt+Dun+large+cheque.png Donate - Supporting the best Advancements in treating this disease will benefit affected children around the world. Without research being done in NZ, we’ve allied our support to Dr Matt Dun who works in Newcastle, Australia. https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/1d227c96-f65b-4631-b80c-0c7b1b54199a/JW+pumpkin+basket.png Donate - Raising awareness We’ll be sharing new-news from relevant doctors, scientists, and clinical trials. We hope we’ll be able to draw a direct line between our investment, and progress in finding effective and safe treatments, and eventually, a cure. https://www.jemimaswish.com/news daily 0.75 2023-06-13 https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/85d9672d-5f84-4a26-a24a-136cf843e342/2c6b036d-64bd-4a2d-97f2-75f90111a41d+2.jpg Blog Paul McArthur (friend) and Brett Hoskin (friend) https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/40f47859-f0bb-4f86-96ba-29799aa7a1c2/IMG_5106.PNG Blog Wellington teen Jemima Gazley's selfless campaign sees cancer drug-screening robot launched in Australian lab https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/5c9329db-ea8d-44d0-a006-b27bec74f658/3cf01394-94a7-4b99-a496-f811d4174535.jpg Blog Myles Gazley (Uncle) and Mark Sainsbury (MC) https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/46224d0b-0054-41cd-a1ba-3cf75f583903/IMG_4305.jpg Blog Jemima Gazley's 'JEM-bot' begins cancer-detection work in New Castle, Australia https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/a12072a9-18f9-4746-987f-9e8d6e55e0e3/486767cf-2aa4-4208-8ae4-5c3ce33d1007.jpg Blog Betsy Bond (friend) and Annabelle Wilkinson (Aunt) https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/401bc93b-93ad-44ae-b0d7-f5a904d5b99a/a5d3f6af-c8e3-4b6c-b692-bc30efd5e29e.jpg Blog Chris Tse (Chair of Brain Tumour Association NZ), Tricia and David Gazley (Grandparents) https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/d1fa757f-4b22-444f-93a7-df838a627003/image0+%282%29.jpg Blog Jem-Bot begins work at Newcastle University https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/d771b3ff-f9a7-4099-9166-bd9458f7adac/c6c5b3f9-880e-45c9-aee4-3f1199e24e7c.jpg Blog Chris Tse and Edward Wilkinson (Cousin) https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/87b2daa1-739e-460a-a253-abdf8b66f0f3/f6a515de-d760-438c-be88-f0e8f31de2fa.jpg Blog Paul McArthur and Louis McArthur (friend) https://www.jemimaswish.com/home daily 1.0 2024-11-17 https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/61728f54-7012-45b6-b15e-39beba5ecc37/7DF37D42-9C54-436A-982D-796DBFB6D188.jpg https://www.jemimaswish.com/pedpallnz daily 0.75 2024-08-09 https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/e118fb28-bf9d-4ff2-b67d-1279d90e8f34/IMG_3737.JPG Paed Pall When a family is told to ‘go home and make memories’ time becomes so very precious. I feel like I lived a lifetime with Jem in her 8 month illness. We were forced to be so present, not wanting to waste a moment of it; the luxury of tomorrow’s uncertain. It occurs to me that even 100 years wouldn’t have been enough and I was so blessed to have 15 of the best with her. I can’t sugar coat it though, that’s just time and counselling talking*; those months were also harrowing. Pediatric terminal illness is exactly the shit show you might imagine it to be — and then some. I wager every family who's walked this lonely path has a pocket full of shocking and usually unrepeatable experiences; not all from the devastation of a horrid disease, but from the circumstances families are forced to navigate to have their kids cared for. The bottom line is that some children will, and most children will not — receive specialist palliative and end-of-life care when dying from a serious illness. https://images.squarespace-cdn.com/content/v1/61a02630766fd3665876d588/cfeee412-5f51-48d2-ac57-6e032d3e7f3e/RK+PPC+NZ_logo_white_2024.png