HK$664,380raised of HK$650,000.00 goal goal
As some of you know, in March last year, Adrian was diagnosed with Glioblastoma Multiforme. The journey over the last several months has been a rocky roller-coaster.
Glioblastoma is a grade IV brain tumour -- an extremely aggressive brain cancer. “Standard of care” treatments include surgery to remove as much of the tumour as possible, followed by radiotherapy and oral chemotherapy. Despite this treatment the median survival rate is 15-17 months after diagnosis. This is partly because brain tumours are often detected only after the onset of neurological symptoms -- in Adrian’s case, loss of his left finger movement.
Following the standard treatments, the excellent Dr. Peter Woo at Kwong Wah Hospital (alumnus of King George V school -- where Emma & Sophie go!) and Dr. Aya El Helali at Queen Mary Hospital recommended that Adrian try experimental therapies. One of these, “Tumour Treating Fields” involves strapping electrodes to his bare scalp for 24 hours a day, three days at a time. (You may have seen Adrian wearing these like a spaghetti-hatted trooper!) Another involves infusions of Avastin (“Ava”), together with an oral medication called Selumetinib (“Sally”), which is a repurposed drug originally intended to treat a rare genetic condition in paediatrics, but can also prevent tumour cells from growing. Together, these therapies held the line for several months. Sally seems to have done what she could, and Adrian is now taking Irinotecan (“Irene”) chemo infusions instead.
Medical insurance only went some distance, and the costs are adding up. The PVW Foundation has generously helped with 6 months donations to cover some drug costs, and the Hong Kong Pharmaceutical Care Foundation has also subsidised the cost of the TTF. Despite this, Adrian and Norie have paid over HK$1,300,000 out of pocket for these therapies since July 2022. All surgery and treatments have been through the wonderful Hong Kong public health system and amazing doctors, but the expensive ones have had to be self-funded due to their experimental nature.
Hong Kong is Adrian’s home. He has always dedicated himself to our community, of late even typing one-handed updates for his beloved Sai Kung Stingrays Netball club, and cheering the loudest from his wheelchair at the games and year-end gathering. His forbearance, dignity and gentle sense of humour remain unchanged. (Read below his experience in his own words.)
Last year, Norie and Adrian were overwhelmed with gratitude that so many of you had reached out to them and knowing Adrian is truly loved. And now today, with Adrian having had to retire, and Norie having given up employment to devote herself to full time caregiving, we are turning to you for help.
Please help! Any amount raised above the fundraising goal or unspent on Adrian’s treatments will be donated to the wonderful Hong Kong-based PVW Brain Tumor Foundation to support other brain cancer patients in need.
Thank you all in advance for your generous support.
(P.S. The fundraising goal and donation amounts are denominated in Hong Kong dollars. The site will accept payments in HKD from "almost any credit card and debit card, no matter where the donor lives".)
Reflections by Adrian
Who am I?
First and foremost a husband and dad, revelling in a wonderful family: Norie and I and Sophie and Emma. Cheesy but true.
For 30 years I've been technical director at Clarity English – a publishing company which I started with another business partner– this has just been the best and most satisfying job.
In the past few years I became highly involved with netball in Hong Kong. First as a supporter for the two girls, then helping out with Sai Kung Stingrays, their club. Then I became an umpire, and also took over as head of netball for Stingrays, running the admin side. Finally I was able to help run HK Junior Netball League for a year, until the tumour struck. Nothing beats a full day of netball in Mongkok when your own kids are playing and you have a whistle – it means for a short time everyone has to listen to you and do what you say no matter if you are wrong or right!
March 2022: How it started
Saturday I was fine. Sunday I was fine. Monday crack of dawn no complaints from anyone when I walked the dogs. But it started to go wrong at work on Monday when I couldn't properly type the single word I've typed most in life. A.d.r.i.a.n. Left little fingers just not hitting their target. On Wednesday I went to the doctor after I felt a hand on my back and it turned out to be my own, caught up in my backpack strap. Straight to A&E he said. One CT scan later and I transferred to a hospital with a neuro department. An MRI later and I learnt that I had a tumour in my brain… but what sort?
Most hospital doctors wear shiny brown brogues or crocs. So when a pair of black DMs swum into view by my bed, I felt in the presence of someone different. Dr Peter Woo explained he didn't like the look of the tumour so straight into the operating theatre for me. Like a true maverick he smuggled the whole family into a little space at the end of the corridor, during the height of Covid, to tell us the biopsy showed glioblastoma – a highly cancerous tumour.
The next influential doctor I met also had fantastic shoes, though Dr Aya leans towards beautifully coloured heels. She has guided us through lots of treatments and ups and downs with immense humanity and skill....more updates to follow.
- Anirban Mukhopadhyay
- Funds master
In Loving MemoryUpdate posted by Norie Negishi at 10:43 pm
Dear friends, It is with the deepest sadness that I share with you the news of Adrian's passing on July 27. We flew to England on June 9th, in a flurry of packing and moving our lives once Adrian had moved heaven and earth to secure me a spousal visa. . . . .
Service & Celebration of Adrian's LifeUpdate posted by Sujata Visaria at 08:41 pm
With great sadness we must inform everyone that Adrian passed away on 27th July 2023 in his home in Cambridge, surrounded by his loving family.SERVICE: The service and celebration of Adrian's life is scheduled for Wednesday 30th August starting at 11 am BST, at Cam Valley Chapel, Field Farm Drive,. . . . .
UK visit by AdrianUpdate posted by Norie Negishi at 05:10 am
It had been more than 3 years since we last saw Mum and Dad and no matter how good a Whatsapp video is, everyone wants a hug from their parents in this kind of situation. We pulled the kids out of school for two weeks so we could avoid Easter. . . . .
Written by Katie StokesUpdate posted by Norie Negishi at 06:26 am
Adrian has always been a great appreciator of the small things in life – the bass in a song, the flavour of cucumber in a G&T, and the beauty of flowers on a sunny day. Maybe working at a florist as a teenager with my father had something to do. . . . .
My Day at Queen Mary Hospital by AdrianUpdate posted by Norie Negishi at 09:38 am
My day at Queen Mary HospitalWednesday or Thursday every other week is my main doctor and treatment day at QMH. We leave home before 8am to get to 8:45 blood taking. Norie drops Dina and I at the wheelchair ramp access to the Professorial block. We race up to floor. . . . .
By George (As It Was)Update posted by Anirban Mukhopadhyay at 03:25 pm
March 2022 was a surreal month. As Hong Kong reeled from a devastating Covid wave and we all stayed locked at home, Adrian and I allowed ourselves to keep meeting every Friday afternoon. Two Timothy Taylor Landlords at Cena in Sai Kung, punctuated by dollops of online word games, kept. . . . .
Update from AdrianUpdate posted by Norie Negishi at 01:38 pm
Dear all, a big thank you for the continuous support from friends and family, an for spreading the words, especially the generous posts from Sai Kung Stingrays community https://www.facebook.com/SaiKungStingrays?mibextid=LQQJ4d , Catherine's Puppies https://www.facebook.com/catherinespuppies?mibextid=LQQJ4d and a big thank you to the kind hearted anonymous donors sending positive vibes and well wishes.. . . . .
...and we're back!Update posted by Sujata Visaria at 11:59 am
The payment problem has been fixed! Thank you again for your patience.
Payment problems!Update posted by Sujata Visaria at 10:02 am
Many of you have reached out to us today (Sunday 12th Feb) because you've been unable to make a donation. We are indeed having a problem with payments, and are trying to resolve it. We will post an update as soon as we've fixed the problem. We very much appreciate
Fairy Godmothers turn SKS Netball CheerleadersUpdate posted by Norie Negishi at 05:28 am
Love of the girls, and a desire to encourage and support them in their joy of playing netball is what brings us court-side in the the chilly damp mornings at the start of the season and the sweltering heat at the end. We (the fairy-godmothers or GM’s, as we are. . . . .