119
119
13

To Russia with love...MP vs MS

$22,815 of $100,000 goal

Raised by 124 people in 13 months
To Russia with love

Some people enter this world with the understanding that they are here only to enrich the lives of others. Our Aunty is one of those people. 

It is both incredibly noble and extremely frustrating. It still baffles our minds that someone with so much love to dish out doesn't believe she deserves any herself. 

When she was diagnosed with MS it was devastating. 

 It shook the very core of our family. 

But you wouldn't have known that she was unwell. She never complained. She never asked for any help. She continued to love her life. Putting everyone before herself. She always tried to keep up, work hard and do what she could to maintain an ordinary life. Even through her own pain she protected us from seeing the debilitating effects of the disease, so we wouldn't pity her. 

As her MS progressed she started slowing down. She had no choice but to stop working. She stopped driving. Stop walking long distances unaided. 

When she first heard about HSCT treatment she asked what was the point?

Our Aunty has no partner. She has no children. She thinks that because of these reasons her life is not worth saving.

She thinks she has no legacy to leave behind. But that's because she can't see what we see.

She's a superhero.

A legend.

Irreplaceable.

A lead character in the story of our family. All our stories, are futures are intertwined with the love she gave us. 

So now we want to give her something she has never had before. Hope.

Hope that you don't need a partner or children to feel truly loved.

Hope that maybe this treatment will help to halt MS in its dirty tracks. 

Hope that we are all here with you.

We honestly don't know how we are going to raise the money needed for the treatment but we know that everyone that knows this woman will do all they can to help.

Mary has been approved for HSCT treatment in Russia for February 2018 and we want to do all we can to get her there.


What is MS?

Multiple Sclerosis (MS) is a debilitating disease, which affects the central nervous system. The nerve fibres, which make up our central nervous system and transmit messages from our brain, throughout our body, are wrapped in a fatty sheath, made of a substance known as Myelin. In MS, the Myelin sheath is attacked causing inflammation or damage. Areas of scarring (Sclerosis) result and these scars can disrupt or even block signals within the brain and spinal cord. These scars may cause loss of nerve fibres as well as their ensheathing myelin.

The disruption or blocking of nerve signals within the central nervous system causes a variety of symptoms, depending on which areas of the brain and spinal cord are affected. Symptoms may include: Loss of coordination/clumsiness, speech difficulties, hand shaking/tremor, extreme fatigue, sight impairments, memory lapses, vertigo, weakness, impaired sensation

MS is a progressive disease and as time goes on, symptoms may become more severe.

What we’ll be funding

Stem cell treatment in Russia is not covered by the public health system in Australia and therefore the costs fall onto the patient.

1. Medical costs: Stem cell treatment
This hospital provides the non-myeloablative HSCT treatment protocol. The approximate medical cost of this procedure is US$50,000+ and is all-inclusive for Mary only. Sometimes some blood transfusions and smaller procedures might be necessary, depending on the patient.

2. Non-medical costs
The family member that would accompany Mary as her carer will also have day-to-day expenses while in Russia. Daily costs would include food, transportation, as well as accommodation. HSCT requires the patient to erase the immune system and then be housed in a completely sterile environment where no one is allowed entry other than the doctor and a nurse. For such reasons, Mary's carer have to seek their accommodation for the entire duration of the stay. 

 3. Flights for Mary and her carer from Canberra to Moscow. Business class will be required on the flight home to minimise the risk of infection.

4. International Health Insurance & Visas
While Mary will be cared for, the carer accompanying her will also need international health insurance coverage for the stay in Russia. Travel valid travel insurance for the entire time of visit, is necessary in order to obtain a Russian visa.

Both Mary and her carer will require a visa to go to Russia. A single entry visa, tourist/leisure via which should be sufficient for MS therapy costs. We will also need to organise a passport and paperwork to submit in order to get the visa.


6. Accommodation
The procedure takes an overall 21 days to complete from the day of arrival. This includes the pre-operation check-up, as well the post-operation check-up. However, the usual in-patient hospital stay is 30-45 days, however, the accommodation arrangements for Mary's carer will need to be for 1-2 months. 

Once the procedure is done, the doctor also recommends that the patient stick around for another week or so in Russia so ensure that no other post-operational complications arise. 

 7. Day-to-day Extras
Mary's carer must also take into account day-to-day expenses such as transportation to and from the hospital and elsewhere. Other expenses will include food, laundry, phone or internet options, as well as other utility bills if need be, such as a cable connection or any sort of shopping.

Once Mary is out of the hospital, the doctors recommend a week’s stay in Russia to ensure that everything is completely under control after the stem cell treatment and operation. During this week, Mary may need special digestive foods.

Pre-treatment:  Visit to Hematologist, Doctors and Dentist to check for no infections that could jeopardise treatment.

Post treatment: Hematologist, specialist appointments, Physiotherapy treatment (3 times a week), Neurologist appointments, medicines – prescription medicine vitamins, specialist Neutropenia diet required – mostly organic diet.
 
 
HSCT TREATMENT

Among the small amount of countries that offer HSCT (hematopoietic stem cell treatment) for MS, Russia is one of them. In recent years, there has been a lot of media attention on the new stem cell treatment in Russia that has been proving to help MS patients significantly. As a result, many Australians are now considering to receive treatment overseas at the A.A. Maximov Department of Hematology and Cellular Therapy, National Pirogov Medical Surgical Center in Moscow, Russia under the care of Dr. Denis Fedorenko.

This treatment although in it’s early stages, has proven to be one of the new leading treatments available with many patients around the world witnessing huge improvements in their health as a result.

Currently, stem cell therapy is an unapproved treatment for MS in many countries including Australia. For this reason, patients across Australia have now considered treatment overseas in Russia.

There are two kinds of HSCTs offered to MS patients; myeloablative HSCT and non-myeloablative HSCT. In Moscow, the medical center offers non-myeloablative treatment for MS. Non-myeloablative treatment is a less harsh procedure. This treatment uses chemotherapy to treat the patient’s immune system so that the lymphocyte population is diminished and not completely removed.

The patient is then infused with their own bone marrow using immunosuppressant drugs so that the immune system can replenish itself with new B and T cells that have no memory of having MS. This therapy basically resets the immune system, however does not erase it completely so the patient need not be revaccinated with childhood vaccines etc.


Stem Cell Treatment for MS Steps

1) Pre-operational examinations: This one week period is used to perform some routine tests to ensure that the patient is free of illnesses and fit enough to undergo the procedure.

2) Mobilization: Injections are given to stimulate stem cell growth in the body before they are extracted for the procedure. There is mild pain or fever which can be easily treated with mild pain killers or fever reducers. This procedure continues for 4 days (twice a day).

3) Apheresis: This process is when blood is collected and then separated into its separate parts. This is also what’s done when you donate blood. The immune cells, red blood cells, and stem cells are separated from whole blood, and while the red blood cells are returned to your body right then, the rest is frozen and stored for the infusion later on.

4) Chemotherapy: In 4 days, the immune system will be almost destroyed so that the new cells can be translated back into the body. At this stage the patient experiences discomfort due to the heavy chemotherapy as well as faces risk of infections and other immunity risks. The patient is now cared for very carefully and is not allowed to have any visitors for a while.

5) Transplant: The stem cells that were extracted earlier are not reintroduced into the body to proliferate and bring the immune system back to life. There are generally some discomforts experienced here like fever, diarrhea, nausea, cough etc.

6) Engraftment: This is the step when the body is left to rest so that the immune system rebuilds and starts learning to defend the body against foreign objects again. Blood tests will prove how well the immune system has been growing. The patient can now continue their recovery at home.

7) Recovery: For a minimum of 12-18 months and up to 5 years, patients see the reversal of their MS symptoms and actually experience 45-80% of their symptoms disappear. This is how long the stem cell treatment for MS will take in order to see long term impact of the treatment.
+ Read More
UPDATE 4/4

Mares was told that she wouldn’t be discharged until her bowel movement issues were fixed. Thankfully, Mares and Pat were able to get a flight home a day earlier than anticipated. Pat packed all of the luggage and on 2 April 2018, they flew from Russia to Dubai at 11.50pm. They were lucky and thankful to have a spare seat next to them. On their flight from Dubai to Sydney, they were really lucky and after talking to the staff, managed to get a four seater so they could stretch their legs out. Mares had to be particularly careful not to come into contact with any germs on the journey home, wearing a face mask to limit the risk. Upon arriving in Sydney, Mares and Pat hired and car and drove home to Canberra. Mares ended up sleeping for around 3 days straight! She is only able to leave the house to attend medical appointments as she is slowly trying to build up her immune system and avoid germs. Anyone visiting her room needs to gown up, face mask, gloves, and shoe protectors.

So now, we wait and hope!! We wait to see how Mares recovers and hope it’s smooth sailing during this period and for Mary’s future.

The family would like to thank every single one of you who donated to and supported this special cause for our Aunt Mary. You helped to reduce the financial burden to make this treatment possible, and gave Mary the strength and encouragement to give it her all to fight this disease. We will be forever grateful for the love and support received and hope in other times of need we can return the favour and give back to our community, family and friends. A special thank you to Patty too for being Mary’s pillar of support, always.

Mares would like to make a special mention of her appreciation of the nurses and doctors at the hospital. She couldn’t find the words to express exactly how hard they all work and how thankful she is. They were very supportive, professional, kind, 24 hours a day, seven days a week. They went above and beyond to ensure she was as comfortable as possible and she cannot recommend them enough. All in all, they were an amazing crew.

I will be sure to keep you updated on Mary’s recovery at home. If you want to send her any messages or send your well-wishes, she can be emailed at: maryperre01@gmail.com

TO RUSSIA WITH LOVE XO
+ Read More
UPDATE 3/4

Day 15 – Sunday, 11 March 2018
‘Rest day, not too many drips (plenty of tablets though). Resting up for stems cell replantation stage tomorrow. Managed to get out of the building for any hour or so, it was great to get fresh air even if it was cold. We had a driver who drove past a few sites but we didn’t get out of the car. Area of concern, bit nervous about replantation therapy tomorrow, but everyone is different, hoping for smooth transition ☹ Back to no bowel movements.’

Day 16 – Monday, 12 March 2018
‘Stem Cell replantation day commences today. I felt like a celebrity, everyone coming in and out, people flashing things – I’m feeling famous (not!). I have to confess, not one of my finalist hours of the replantation therapy-I had the chills, high blood pressure, that horrible taste in your mouth, in and out of consciousness, mass elephant on my chest all day and the vomiting…and wait there is more to come… the second bag of stem cells…..☹ after a few hours I was starting to feel a little better. The other 4 replantation patients also attended the stem cell party and collected our badge of honour. Just happy that part is now over. Other concerns, back to no bowel movements (sigh...)’

Day 17 – Tuesday, 13 March 2018
‘I’m the Michelin Man and am swollen from head to toe, steroids, water retention….put me out to the pastures. The staff have further attempted to tackle their efforts to fix my bowel constrictions and movements. Now without going into much detail, I’ll say that some movements happened both ends. First day of isolation, got me tighty whities, baths with vodka (what else would you expect?). No actual showers per say, only wiping down areas of the body and face.’

Day 18 – Wednesday, 14 March 2018
‘Day 2 of insolation, got up nice and early to have another vodka bath. Nothing like routine to get through your day. What will I do today...? not really sure yet. There is eating, sleeping, watching TV. Why didn’t I pick up a hobby like knitting or something? Just catching up on daily news around Australia and the world. Not sure whether will start to watch a TV series or listen to the radio, let’s see how the day goes. Not much eventuated....’

In total, Mares was in isolation for 11 days. She said the days felt as if they went forever. Over this time, Mares underwent many blood and platelet transfusions (as platelet levels were low), more steroid injections, no further bowel movements and very sore mouth ulcers. She also experienced extreme pain in her legs like someone was ripping the muscles from them. She was given some pain relief and sleeping tablets to help get her through.


Day 25 – Wednesday 21 March 2018.
‘Captain’s Lodge Day 8 of isolation. Doc said he might let a few of us out of isolation tomorrow, most people’s platelets are increasing. There are murmurs and rumblings but still no bowel movements. It is also nice to know that I am not alone. I may still be in isolation for few more days due to everyone getting hit with mouth ulcers. Where is WILSON? The ball from Castaway with Tom Hanks. How bored can one person get? No motivation, everything is sore. I think I have mouth ulcers on mouth ulcers and it makes it very difficult to eat. Cocktail of steroids and plasma infusions. Here’s hoping this works. Other isolation patients have simular mouth ulcers. My little hair buds are now starting to fall out. Baby hairs are going to be coming through. This will look a little patchy, nothing that a few hats or wigs couldn’t cover. I can’t believe how bored I am and how sick I feel. Missing home a lot.’
Drips, drips and more drips...
:(
Lucky Patty!
+ Read More
UPDATE 2/4

Some noteworthy observations from Mares:
• When they landed in Moscow, everyone on the plane was clapping which freaked Mares out. Apparently, this is a tradition when there is a very turbulent and scary flight they clap for landing safely LOL.
• Cigarettes are a couple of dollars to 5 dollars a pack depending where you go – the larger supermarkets are obviously cheaper the smaller kiosks/shops.
• Vodka is exceptionally cheap, as little as a couple of bucks a bottle (so many different varieties and cheaper than some soft drinks) and again cheaper in the larger supermarkets.
• It’s normal for people to be drinking a beer in burger king at 10am, yes 10am and BK sells beer!!!
• Vodka shot glasses are everywhere (in the hotel room – just as if we have coffee or wine glasses, they have shot glasses) and its customary to drink a shot if asked or it will be seen as an insult not to drink. These are also cheap as chips in the shops.
• There are beer stations in the shopping centres, opened in the early morning, it’s like walking up to a coffee kiosk and getting coffee, but beer and is cheaper if you bring your own glass…
• People are seen drinking vodka out of steel flagons in the morning at 9 am or earlier on their way to work.
By day eight Mares hadn’t had much sleep and was having drips to encourage bowel movements and throwing up a lot. She had another course of steroids during the day and also had her head shaved along with some other patients! She thinks she looks like someone from the movie Schindler’s List.

After a final course of steroids at 3am, she started the stem cell extraction the same morning. She wasn’t able to move too much as the line kept collapsing. Even after four hours they weren’t able to collect enough cells, so another course of steroids would be required before the second attempt. The good news is that on this day, Mares had bowel movements and she was a happy little camper!!!

More steroids were administered before the second extraction of stem cells, where they finally said Mares had enough to start chemo. Mares was advised that there will be some sleeping during this next phase followed by further comatose like behaviour during the 10/12 day isolation phase. Mares mentioned that at this point is was minus 25 degrees in Moscow!?

She was singing ‘zip-a-dee-do-da, zip-a-dee-day, I’m starting my chemo today’ on day 11. She was excited as it meant one less day in her room. Mares said she understood how prisoners must feel being locked up 23 hours of the day– it just makes you tired. Mares was hooked up to a number of drips to receive both chemo and steroids, as well as saline to remove/flush out toxins. On this day mares was mostly bedbound and lots of her fluid retention started exiting the body in short bursts.

Breakfast moving forward was a cocktail of tablets, drips etc., nothing changed with lunch which was further drips and tablets, can you see the pattern? Breakfast, lunch, afternoon tea, dinner and finally bed time. This was her routine for the next little while. By this stage Mares said she was missing vegemite toast so badly!!! She did pack some vegemite but it was confiscated at the airport when leaving Australia.

Over the next four days Mares had her chemo. She said each person reacts differently and some had it worse than others in terms of side effects. She said she, along with the others receiving treatment, decided to try and go with the flow and try to stay positive - the power of positivity is wonderful thing. Mares experienced nausea and throwing up throughout her chemo so she wasn’t able to move around too much. Everyone receiving treatment was using messenger to provide updates on how they were going and feeling because nobody had the energy to move from their rooms.

Day 14 – Saturday, 10 March 2018
‘Day 4 of chemo, when will this feeling end ...? I’m pretty much over it. Thank goodness for the final day. I looked out the window and it was snowing again -25 or something like that, looks awesome (see pic of view), but can’t even go outside rugged up, too bloody cold and the wind chill factor when it hits you is -40+. Remind me never, ever complain about Canberra weather. Tomorrow will be a rest day for four of us and everyone is looking forward to that.’
Mares and Patty sightseeing
Mary's Russian home
View from Mary's room
+ Read More
UPDATE 1/4

Hi all!

It's Sarah here! I know you are all anxiously waiting for an update on Mares. She has returned from her stint in Russia and is slowly recovering at home under the watchful eye of her family who kindly disinfected and sterilised a section of the house where Mary must remain, in isolation, for the next 3-6 months, at least.

Upon arriving in Moscow Mary said she’d never experienced cold weather like it before (-15 degrees and below). On day two, before commencing her treatment, Mares and Pat decided to venture outside to see what was around. This turned out to be a bad idea. They went the wrong way, got lost and nearly froze to death. Lesson 1, don’t leave the house in a foreign country without a working mobile. See the pics of what they were dealing with!

On day three of the trip, Mares was admitted to the hospital to begin her treatment. She said at the hospital, they have a tradition when someone finishes their chemo everyone meets together in the common area (outside Mary’s room) where they have a meet-and-greet followed by the blessing of the patients. This is also where the stem cells that are left in the dry ice get thrown on the ground. Mares had to think quickly and lift her feet when they threw them! Pat met a couple of other carers that he made good friends with. They were able to show Pat the trains and trams to catch to get to the hospital, and they took him out for a few drinks on the town and let’s just say, Patty was out of practice!!

Mary’s treatment started with a whole day of tests including urine, bloods, x-rays, MRIs, ultrasounds, poking and prodding in all of her orifices. On day five Mares met with Dr Fedorenko at 10:30am to get her results. He had an in-depth conversation with Mares and Pat about the results and what her options were moving forward. He said Mares had ‘progressive active legions’ on her brain and spine which were causing further deterioration on her health. There were also some other minor issues on other body parts/organs. The Dr recommended to start the treatment straight away. This consisted of the first course of steroids - 400ml which took about 40 minutes. This is for stem cell stimulation and the results would determine the next steps. Mares was told she may have to continue this stem cell stimulation for a further 3-6 days depending on the results. Over the next few days and weeks the plan for Mares was:

• Insertion of special catheter in neck for stem cell collection and chest x-ray control
• Collection of stem cells (1, 2 or 3 days) depending of the number of stem cells collected (they need to collect 2 or more million hematopoietic stem cells per kilo of body weight).
• Removal of neck catheter and insertion of new catheter for chemo and further treatment
• Chemotherapy for 4 days
• 1-2 days’ rest with supportive medication infusions twice a day
• Day of transplantation
• Isolation.

Mares said the hospital food was ordinary - sloppy/watery yellow mash potato with an unusual taste not one she had had before, pickled beetroot, some dark and white stale-ish bread for lunch and dinner with some other variations (occasionally with a pickled dill cucumber or peas). Oh and meat even though she told them she was vegetarian!! And for breakfast, some sort of buckwheat/oatmeal cereal with the same bread – turns out this was just porridge… Mares went through her nut/fruit and yoghurt bars that she brought from Australia quickly. In true Mary style, she went prepared and packed an entire suitcase of food consisting of bars, crackers, biscuits, lollies, gum etc. LOL.

Over the next few days Mares underwent a few more courses of steroids, some at 3am. She had her neck catheter inserted followed by chest x-ray control. Mares said this was a little uncomfortable and sore for a while (which you know means it was SUPER PAINFUL as Mares is a tough bi*ach and never complains!). Not much sleep was had over these days. During this time Mares was also struggling with bowel movements which ended up being an ongoing issue for her entire hospital stay, primarily due to the number of tablets she takes as well as her MS symptoms.

Mares and Dr Fedorenko
Mares and Patty got lost here...
She so cute
+ Read More
Read a Previous Update

$22,815 of $100,000 goal

Raised by 124 people in 13 months
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
CA
$500
C Anand
6 months ago
SB
$500
Shelley Bartley
7 months ago
MB
$200
Michele Black
7 months ago
SA
$500
Sam Ajredini
7 months ago
$100
Amparo Storey
8 months ago
AT
$500
Angus Tulley
8 months ago
$500
Occi Madocci
8 months ago
EI
$50
Elizabeth Ingram
8 months ago
PS
$50
P M C Sutton
8 months ago
or
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.