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Hi! My name is Mary de Nys (Mary-Ann Nieuwendyk) and I am the Human Resources Officer and the Principal’s PA here at Tenison Woods College. I’m married to Andy and my daughter Piper is a student here. I have been ‘back’ working at Tenison Woods College for 8 years and was a “Class of 88” graduate…30 years ago! 

If you have been at Tenison for more than 15 minutes you may know that I travelled to Russia in 2015 for HSCT (Hematopoietic Stem Cell Treatment) to treat (halt!) my Multiple Sclerosis. 

I was diagnosed with MS in January 2002. I lived on the sunny Gold Coast, I worked 2 jobs, was a National Dragon Boater (competing in 2 World Championships in Nottingham and Philadelphia), was very social, a dedicated shopaholic and a gym junkie. I walked most mornings on the beautiful Gold Coast beaches and then would either dragon boat or go to the gym in the evening. It’s safe to say I was pretty ‘full on’. 

If (like me 16 years ago) you know nothing of MS, in simple terms, it is an auto immune disease. It affects the central nervous system, interfering with the brains ability to communicate with the rest of the body.

The immune system is unable to recognise what is foreign in your body that needs fighting and what IS your body…so it just goes about destroying everything along the central nervous system. Scar tissue/lesions form in the brain and along the spinal cord. Depending on where they form, determines what symptoms you will see.  Fatigue, walking difficulty, memory loss, bone pain, constant pins and needles, heat intolerance, numbness, cognitive function…the list is endless and never the same for any 2 people, although fatigue and trouble walking seem to be fairly common.

I had (note I said HAD) Primary Progressive MS. This meant I didn’t get ‘attacks’ per say, but was steadily declining over time.  I always did want to stand out from the crowd (ask anyone who saw my hair in the 80’s), so, as it happens, only about 5% of people with MS get Primary Progressive. 

In March 2014 I saw a story on 60 Minutes relating to HSCT. A girl from the Gold Coast, Kristy Cruise, was the first Aussie to head over to undertake the treatment in Moscow. She was a pioneer for Australians with MS seeking to change their lives. On a whim, I sent an email to Moscow and within a day, was emailed back with my admission date!

You may be thinking - Why Russia? Surely if it this treatment has any sort of street cred, they’d do it in Australia? They do - but only in very extreme cases and I did not meet their criteria.

So with my mind made up and a date set, I had to get about raising funds! I had a little committee of my incredible family plus Maxine Tuffnell, Francesca Dickson, Michelle Coote, Chris Lloyd, Leah Mullen and Nikki Mullen. I had mind-blowing support with fundraising from our wonderful Mount Gambier community and our Tenison community. I had many events including a MSquerade Dinner and Auction, a happy hour, a ladies’ lunch held by East Gambier, school fundraisers, raffles, photo sessions, BBQ’s and even a Dragon Boat regatta on the Gold Coast!

Thanks to the amazing work of Scott Dickson, I received a signed Socceroo shirt from Tim Cahill and also received messages from Anna Meares and Jessica Trengove plus a phone call from AFL legend Neale Daniher (who is one of my heroes)!  It was beyond anything I could have ever imagined.

On 5 September 2015 I jetted off to Russia by myself. I knew I was going to spend 5 weeks in hospital so as long as I got myself there, I figured I’d be okay alone.  And I was – tenfold. My Doctor and the hospital staff, patients and carers were incredible!

The hospital was heavily guarded (think soldiers with machine guns) and surrounded by barbed wire - much like a jail. It sounds ugly but once I was in the grounds, there were many beautiful buildings and gardens, a stunning little chapel and so on. All the buildings were linked by underground tunnels so you were scooted underground from building to building!

During my stay there were 5 other Aussies having treatment– with 2 from Adelaide!  There were also people from Norway, New Zealand, Canada, America and (1) Russian…but the Aussie contingent was by far the biggest!

Very basically, the process included: (incredibly thorough) testing; stem cell removal through bone marrow; chemo to destroy my immune system; stem cells transplanted back in; isolation; more chemo; and home. I had picc lines the size of knitting needles inserted into my neck for the stem cells to be extracted and re-transplanted, and for all medications, chemo, steroids, fluids etc to be administered. 

The transplant of stem cells was insane. I cannot describe how this felt. My entire body was ‘popping’. I was shaking and had a fair bit of trouble breathing. While it wasn’t painful in the slightest – it was I-N-T-E-N-S-E! This was the start of a body free from MS and loaded with ‘clean’ stem cells ready to rebuild my immune system.

I was put into isolation for 8 days. I was given 100% vodka to bathe with and a mouthwash to use instead of a toothbrush. Meals had to be microwaved to kill bacteria and I was only allowed to use one set of dishes. All my belongings were taken away other than electrical things that passed inspection (computer, phone etc) and no one was allowed to enter the room other than my Doctor and hospital staff.

The hospital and staff were incredible however I must tell you about the food. Conjure up your worst image of ‘hospital food’ and double it. Pretty much everything was beige and soggy. Common meals included porridge (any time of day), liver, buckwheat, ox tongue or boiled beef. There was even meat in a can that had the consistency of custard and there was NO coffee. It wasn’t great… but highly amusing each and every day.

All in all – it was one of the best experiences of my life.

I am now 2.5 years’ post-transplant. I have not seen any improvement and I have to constantly remind myself that this treatment never claimed to reverse any established symptoms, (especially given that I had MS for so long) but only claimed to stop the disease progressing. I have met and heard from a lot of patients who have had improvements so I remain hopeful that if I continue to look after myself, then I will see ‘something’ in the coming years.

As it is, I still work full time and remain independent so the ‘great unknown’ of what this disease could do to me has gone. I have absolutely no regrets about going to Russia and undergoing this treatment. I am positive it has stopped the progression and I remain hopeful for improvement.

The community support I received was incredible and so humbling. I was shown such unbelievable kindness by our school community and the wider Mount Gambier community, my doctor and the staff in Russia, and the patients and carers I shared my experience with. I will never be able to say ‘thank you’ enough.

I exercise (a tiny bit), do a bit of physio and in July, will do a 14-day intensive neuro-physio program. I’m not one to give up.

These days I sometimes get around with a walker, sometimes with a leg brace, fall at least once a week but remain ever grateful and hopeful. 

Thanks for reading. Carpe Diem.

“Keep your eyes open, hold tight to your convictions, give it all you’ve got; be resolute”.  1 Cor 16:13

“For I know the plans I have for you - plans to prosper you and not to harm you, plans to give you hope and a future” Jeremiah 29:11

Mary de Nys

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