NO ACTIVE MS! 6 months post transplant

I am happy to report that my six (6) month MRI shows no active disease!

So the wonderful HSCT treatment was successful in stopping my MS from attacking my brain! YAY! Although unfortunately, I am very aware that I do still have many lesions (scars) in my brain and spine.

Check out below one of my MRI slides of my adorable brain, the white parts are damaged bits:

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MRI slide of brain and spine
Irene Christis

I have been recovering since my mayoblative HSCT treatment that was performed at St Vincents Hospital in Sydney by the brilliant team under Dr Moore on 1 April 2015.

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Irene Christis

The treatment process and chemotherapy were ridiculously intense.

That was the most scariest, last best hope to treat my MS – quote from Babylon 5 come on I had to get my geek on 😉

Following a lengthy stay in Canberra Hospital that resulted from a significant MS attack leaving me immobile and unconsciousness. I was hovering around 9 on the below EDSS scale  graph. 10 is death.

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Expanded Disability Status Scale (EDSS)

The Expanded Disability Status Scale (EDSS) is a method of quantifying disability in multiple sclerosis and monitoring changes in the level of disability over time. It is widely used in clinical trials and in the assessment of people with MS.

I  knew that I had get up, move and work extremely hard to be able to meet the criteria for the Autologous Hematopoietic Stem Cell Transplant (HSCT) treatment.

I had to be 6 on graph and walk 100 meters. I started with small improvements from moving one toe to eventually walking with cruches.

I JUST KEPT BELIEVING THAT I COULD.

I have to say that the HSCT treatment  process was seriously terrifying, life changing and nessary for a chance of quality of life.

Currently I am keeping busy with lots of rehabilitation both physical, mental to remap my neurological paths…kind of like renetworking a computer system.

Plus many more medical appointments and a much needed mother daughter vacation!

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Mum and Erini on holiday

Back to reality doctors, medications, physiotherapists, acupuncture….blah blah. It’s all good, I’ll keep moving forward getting stronger and working on my showy off muscles 💪

Love Irene xxx

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Stem Cell Treatment for Irene Christis Elliott !!!

Yay let the next chapter begin!

I have been approved for Autologous Hematopoietic Stem Cell Transplant (HSCT) treatment in St Vincent ‘s hospital.

i have set the target for HSCT and mapped this journey for years.

My approach was always to never gave up, never surrender. As much as the destination seemed unachievable, I just kept going and always regularly reviewed my path toward the target.

This next part of this journey is going to be rough but there is hope.

I am staring the first round of chemo and stem cell collection in December 2014, with the massive chemo session planned in January 2015.

For now I am still learning the walking bit – keep reading my blog during this
Life changing treatment.

Love Erini xx

The MS monster returns

So I’ve finished the steroids and just on cue the disease rears it’s rotten head. Day 2 of non steroids and my situation is getting worse.

I did quite well (well as best as I could) in the install stages whilst on steroids, and and now I’m back to how I was in my initial relapse.

So I called Dr Andrews right way to start Mitoxantrone – this hopefully will hold me until my Stem cell treatment.

I have applied for Autologous Hematopoietic Stem Cell Transplant (HSCT) treatment, in Italy and Germany, I will also apply for treatment under Dr Burt in Chicago.

Bugger, I’m right back to when I started, pretty rotten.

Omg I have active lesions!!!

That is the last thing I need to be treated in Sydney!!!!! This is so freaking amazing 😀

I do have an massive relapse and so im on a 5 day course of methylprednisolone (steroids) – poor little Gus…he has fur now, but can’t say if his fur will be there or the same colour during this week 😀

If I don’t get into Sydney which is not confirmed, im getting the plan B-Italy, and D-Germany organised. Its all good. I just hope to walk again, kinda sick of falling.

Crap – not getting treatment for my MS

OMG I receive an email from India that the Manipal Hospital – Bangalore are not accepting any cases for Stem cell treatment towards Multiple Sclerosis from immediate effect. This is as per discussion with the scientific committee.

Including me!! WTF!! 

I will not be getting treatment for my MS…well in the few months anyway.

I had planned to fly out first thing in June. I had made significant perpetrations for the journey, paid for all three airline tickets (mum, husband and myself), resigned from my job and gained the required Visa’s for my treatment. I am now left with no treatment options.

This decision could have not been worse been so close to my agreed start date for HSCT at Manipal hospital.

It feels like I was jumped by faceless thugs, kicked over and over in the gut and still feel winded. As you can tell I am left deeply distressed…well frankin pissed off!

Just to rub salt into the wound further, my tests for the progressive multifocal leukoencephalopathy (PML) returned positive that means I am at risk of the nasty JC virus which affects heaps symptoms include:

  • Abrupt or significant personality changes
  • Recent or sudden change in cognitive behaviour
  • Unusual difficulty with speech
  • Other physical changes

Currently no known treatment, prevention or cure for PML.

So I will be applying for treatment in other overseas hospitals keep watching for my progress

Love Irene

MS – Fertility, blessing, curse

MS is a bloody rotten illness; it takes over your life your partners, your family and the community.

For my family the illness has taken so much. The constant medical efforts, multiple Doctors, Neurologists, hospital, surgery, masses of medications, MRI & blood tests…the list goes on and on.

HOPE is a wonderful beautiful blessing. The hope that was lucky to have received is called HSCT.
I am so fortunate to have an amazing husband and a brilliant family who offered the gift of hope. Plus I am blessed to be good friends with HSCT champion Carmel Turner who shared her HSCT experience and provided hope of a quality of life.

How amazing is the hope of news that there is a treatment that has promise to rid my MS!!! Wow it’s like all my Easters (better than Christmas in the Greek culture) and birthdays combined!!

Fertility & HSCT
In June 2014 I will be receiving HSCT, which means freedom from MS! and hope for quality of life for me, my family and my community.

I am totally super happy about that and at the same time I can’t help but think about everything that I lost or did not have the chance. My thoughts about fertility are deep and intense. I am so annoyed pissed off that I may not have a family.

I am 36 now and there is no secret that I have always wanted to have children.

We have wonderful clever birds, two adorable dogs and coy fish, perfect buddies in our family and maybe even kids.

Up until now the journey has been pain survival and the unfortunate situation now is that I might be in a better position to be a mother (to human kids that is).

The fact is that we are getting older and really want to do things together like travel, hike, ride push bikes together, bucket list things.

My wonderful husband and I have been talking together about the kid thing, the risks if the illness comes back, of the kid gets my rotten MS, how my body will cope with pregnancy. There is a lot to consider.

I was planning to have our embryos frozen for the choice (false or other) to have kids when I recover from Chemotherapy.

There is still so much tho think about for example we could adopt, we always considered this even pre-MS. It would be a gift to have the opportunity to be parents to a child that needs a home.

Still so much to think about …. Keep reading my blog and any thoughts are welcome

Love Irene

WOW – treatment overseas!

I am really getting this treatment!!!!

I received the most amazing news ever from Dr Admit – I have been accepted for HSCT in India!!!!

It has been a few weeks since I received this wonderful news and to be honest I am still in shock, terrified and so very elated all at same time. At the moment, I’m pretty terrified. But so very happy!!! Oh yeah, and still a bit shocked.

Thank you so much everyone for helping me with my Big Fat Greek Fundraiser, your amazing support is amazing and so beautiful. The process from now until treatment in India is crazy overwhelming and the support from my fundraiser is a tremendous help.

I have been trying to get access to this treatment the last best hope for myself for so long now.  I read the acceptance email over and over. And tuned off my computer and then re-read the email. Had some lunch and re-read the email.

I still have so much to do organise a timetable and create an end-to-end schedule, Visa, will, accommodation, flights, travel insurance, doctors now and also on return including Haematologist, freeze my eggs, organise HR leave without pay, bills, sell cars…wow this is huge.

The amazing outcomes from the Big Fat Fundraiser are all the amazing conversations that have stated from this event, which have led to more discussions with MS mates, members of Government and hopefully actions.

This is so amazing!

I look forward to sharing my journey with you and hopefully chat with you on Skype.