Success…..0+189 Days…

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I know its been a while since my last blog and thought this was the perfect time to update you all on the success I have had!

My 6 Month MRI scan was due since Russia and the results are in.                                            DRUM ROLL…………….SUCCESS

What does this mean?

There are NO new Legions, NO increase in legions, NO active legions….The words from my neurologist “It seems you have had effective treatment in Russia and I’m extremely happy with the result”. Yes, Finally an acknowledgment that this treatment actually works and I am one of many patients with similar results.

I have had energy, am feeling good and just deaing with some symptoms that I had previously. ALOT of my symptoms have GONE completely, while only couple of other symptons are hanging about. No Burning sensations, No Pins & needles, No numbness in my feet, dizziness has subsided, No more headaches….And NO MORE PROGRESSION!!!!!

My MS has been stopped in its tracks!!

I have been enjoying my quality of life and just getting back to the basics. Good eating habits, regular exercise, meditating and spending time with my family.

This not only has been and physical journey for me but a spiritual one too. I have made new friendships, new connections,  helped others, learned alot about myself. I now have a different view on what’s important, not to sweat the small stuff and to enjoy my life with my family.

There are many people out there in the same boat as me. I have spoken to some of these people, some people are quietly following my story, and thats great!

If it wasnt for this amazing woman “Kristy Cruise”, who shared her story on 60 minutes, I wouldnt be where I am today.

By sharing my story, I hope it has given people like myself, the courage to at least research further and ask more questions.

I am here to help or guide people the same way Kristy guided me.

Thank you once again to all the amazing friends, family & strangers who supported me on my Russian Journey.

Wishing you all a Merry Christmas and a safe and Healthy New Year!!!

♥♥♥♥♥♥♥♥♥♥♥♥♥♥

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3 Months Later………..

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    Today marks 3 months since my Transplant……

I have been focusing on my health and trying to protect  myself during this flu season as best as I can.

I have been to see my neurologist who was so happy to see me and I could also feel her frustration that HSCT is not available in Australia. She too, agrees that this will be main stream treatment in 10 years time.

I thank my lucky stars every day for the opportunity that I was given by the wonderful Kristy Cruise, who made me aware of my options.

A ‘NEW LIFE” with this disease stopped ♥

Whilst this diseased has been halted, I still have some days where I feel tiered, fatigued and have had some mild anxiety. I haven’t been dizzy, haven’t had blurry vision, and haven’t had severe burning on my body, which I used to have!! BONUS!

I have learnt to listen to my body and not push myself too much.

Above all, I feel good!!! I feel positive about my future and what lies ahead for me.

My next appointment with my Haematologist is at the end of this month and this will give me a better indication as to what my cells are doing……So far so good.

I have been slowly starting to get out and about a bit more now and am so excited that spring is upon us. I will get to enjoy more fresh air and start walking daily, as it has been hard during the winter months.

My hair has grown about 1.5cm and have enjoyed not having to blow wave my hair every day (like I used to) Wigs are so in right now!!

I have enjoyed being back home and spending time at home with my girls, doing the simple things like homework, washing dishes together, playing games and just hanging out. This journey has given me perspective on life and what is important.

To be happy and not stress about little insignificant things…..Enjoy life with your loved ones and do what makes YOU happy!

Thank you to everyone who has followed my journey and supported me during this time.

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Together Again………

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Today marks 1 week that I have been home from my Russian MS Journey…………..

Tears just kept flowing down my face when I saw my girls and they were eagerly waiting for me at 6:30 in the morning at home with decorations and a beautiful hand made Welcome home banner!

I will never forget that moment that we shared that morning! We were finally TOGERHER AGAIN!!!!!!

After a long trip, I WAS HOME! Ready to now rest and recover and start my new life with my family!

I had my first blood tests done this week and met with my Haematologist  to discuss my blood count.

Everything is where it needs to be!!  He is happy with my recovery thus far and was happy with the treatment I received in Moscow. These blood tests will be done weekly for the next month and then in another 3 months time. I will then see my neurologist in 6 months time for an MRI scan.

I had an injection of steroids a few days before leaving Moscow and this seems to have given me some bursts of energy and have been struggling to sleep at night. Today was the first day I had NO energy and the steroids are starting to wear off so a little fatigue has kicked in today with some mild stomach cramps. They do say that there is a roller coaster ride that you experience during recovery and I think this is it.

Lucky I have my mum who has been absolutely amazing cooking for me, making sure I’m okay and getting anything I need.

I am listening to my body and just spending time at home recovering and not over exerting myself.

Thank you all for your continued love & Support

Poppy xoxo

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The Home Stretch…………

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WHAT AN AMAZING EXPERIENCE THIS HAS BEEN!!!!!! I feel soooooo blessed and have to keep pinching myself that I ACTUALLY DID IT!

I have 3 more days left with this amazing team here in Pirogov and am going to miss them immensely!

The last 3 days have been a little tough, with excessive bone pain at all hours of the morning.  Dr Fedorenko says this can effect 20-30% of patients at this stage, due to the stem cells recreating their magic.  Up at 1am, 4am then 8am for Heavy duty pain meds. So I have felt a little weak the last couple of days and just chilling out in my little bubble.

Yesterday I had a final 5 hour infusion of chemotherapy (Rituximab) to kill any residual cells lurking around. I also was given some more steroids yesterday and today to give me that boost I need for my return home. These steroids should last a few weeks, but can have an effect of  low energy in about a months time. We will just see how we go.

Finally today, I lost my neck accessories ( MY PIC Line is GONE) I’m free!!!!!!!

So, what now……..I leave here Friday evening ready to embark on my NEW journey!

I would like to personally thank each and everyone of you for ALL your support over the last 2 yrs or so, in my preparation to get here for this ground breaking treatment! I could not have done it with out you.

To my Family -Bill,  Mum, Dad, Roma, Dimitri, Sophia, Dorian, Rahnia, Sammi, for ALL UNITING while I was away and making this an easier experience for me while I was here away from my girls.

To my Close friends- Sarah, Juanita, Rita, Johnny, Emily, Chrisanthi, Alex, Natalia & Nicholas for your amazing support with the Gala and for being there for me.

To the Greek Communities who have supported me in my Journey – Pontiaki Estia, Merimna Ladies, NEOS KOSMOS, Omiros Greek College and all Donations received by our local Greek community – THANK YOU!!

Thank you to the AMAZING Dr Fedorenko and Anastasia and the outstanding nurses here who treated me like a human being. I am eternally grateful for the second chance I have been given with my family to live and long and fulfilled life. Words cannot describe how thankful to you all I am!!

Upon my return I will be coming home and staying indoors. I understand some people may want to come to visit, but in the early months, I need to focus on my recovery and ensure that infection control is managed, so I will limiting my visitors to close Family Only.

I am unable to receive flowers, balloons, or any dust collectors, so well wishes upon my return are appreciated. Chocolate is ALLOWED!!!

Moscow is certainly part of me now and I can wait to return with my children to share with them my story.

Thank you ALL

POPPY xoxox

 

Engraftment……….

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Following my transplant, signs that my stem cells/new immune system are growing (engrafting) and beginning to produce blood cells are expected.

This “new” immune system will have no memory of MS.   As my blood counts begin to rise, my white blood cells will start to fight and prevent infections.  Soon after this occurs, I will be released from the hospital.

Today is the day, that my hair has started to finally fall out!! Engraftment has HIT!!

Yes clumps starting to come out and all over the pillow this morning….This is a GREAT sign!

Dr Fedorenko came in this morning very happy with my Leukocyte numbers today. I have hit the 1 million mark today, which means I will be RELEASED tomorrow from isolation….YAY!!!

Tomorrow will mark Day 8 in isolation – I really cant believe where the time has gone.

I haven’t even done all the things I wanted to in here, but I must say I have thoroughly enjoyed my time in here.

I will be able to leave my room tomorrow (masked up of course) and only allowed in the lounge communal area of the hospital.

One day at a time!

The following day (Saturday) I will be able to venture out in the hospital gardens for a walk! How I am looking forward to some fresh air!!

I will be closely monitored the following days, and given a final 4 hour Chemo infusion 2 days before leaving the hospital, followed by a hit of steroids for my return home.

I have another 8 days left here in Moscow and will be ready to see my girls on Sunday the 28th June…..Not long now!!!!

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Thank you for all your love & support on this journey!♥♥♥

Poppy  xoxo

 

Day 5 in Isolation – Nearly There………

 

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Its been 5 full days in isolation and the bloods are doing what they are supposed to!

Basically its all about the Leukocytes (white Cells) that should see a rise in the coming 3-4 days. The normal range is 4mil-1million (counted as 4-10), so right now I am sitting at 0.1 (100,000) Perfect!

Now I’m in the plateau stage and should start to see the (engraftment) stage in 2-4 days. This is where my hair will start to fall out and this is then an indication that the White cells and now streaming through the bone marrow, creating new white healthy cells. Numbers -should then hit 7-10 million and I can then be released!

Dr Fedorenko anticipates another 3-4 days before ( so possibly Saturday)

So what have I been doing in here you ask………….??

The day starts with blood tests, blood pressure, temperature, routine checks around 6.30am.

Breakfast is served at 9.30am. Every morning around 10.30 the cleaners are in here ready to thoroughly clean my room. I have to go shower while she changes my sheets, gets new towels, disinfects all tables, floors and windows and get my new pj’s ready.

No details are left out and they don’t miss a beat!

This Is a nice way  to pass the time in the morning, until I decide what I feel like doing for the rest of the day…..Movies, catch up revenge, Creative writing in my diary, colouring in (yes very therapeutic)

Everything is broken up by a meal as well, so adds a little structure to the day!

So far I am enjoying this phase of the treatment and has been a really great way for me to see things clearer, simpler, and not hazy! I know what I want, and that’s why I came here….To be happy with my Family!

Pretty simple….My clarity is BACK and I feel my brain Fog has disappeared forever!!

Thank you to all of you for supporting me during this Journey!

Poppy xoxoxo

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Transplant Day – Day 0+

 

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I woke up feeling pumped, ready for my Transplant Day! With such a build up over the past 1 1/2 years,  and I had seen so many other Hscter’s go through this same experience, and now it was my turn………..

Yes My turn for a new Life, My turn to rebuild and get our lives back on track (Just the way it should be) with my beautiful Family.♥♥♥

It was all over in 20 minutes or so and there were 2 bags of stem cells that they need to re infuse back into the bloodstream. Dr Fedorenko and his team were talking me through the entire process, right from the first syringe being injected where there was a Squirt of Heinz Tomato sauce taste that hits the palette and stays during the entire transplant. Everybody is different, but this was my experience, and according to THE MAN (Dr F), All normal!!

Then came the pressure, on my chest, like a baby elephant had decided to take a seat and not leave for that duration. The intense pressure is something I had never felt before, and comes in waves, so allows you to recover before the next so called high pressure hits. For those who have given birth, you would get my gist, similar to contractions!

I could feel the heart pumping a little faster than normal, but just had to relax and let my meditation skills kick in to get me through. I had pre selected a song to listen to during transplant, but there was interference with the ECG machine, which meant that took it away from me. Not to worry, I went into my own world and music was playing in my ears.

I also felt a little nauseated at one moment , but they were quick to inject me with anti nausea drug and also got jabbed in my arm as heart rate dropped a little. They were in Control and I had given them all my trust!

Within moments, DF F, shook mine and Bills hand and congratulated us and gave me about 1 hour to rest before the party celebration out in the communal area!! It was all over!

I was then presented with a badge of an iris, which is a symbol of power of the mind, positive attitude and strong heart. This concept was originated by the previous professor and teacher  to Dr F, who has since passed away. They have kept this legacy and present this to ALL HSCT patients. Also part of the traditional to dispose of the liquid nitrogen that the stem cells were stored in all those days.

Oh What a Feeling! Its truly amazing and inspiring to see. Words can’t describe it.

My isolation stage will most likely start tomorrow!

Thank you all for following my journey. Your support has really helped me and words cant even describe my gratitude to you all. xoxox

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Chemotherapy-Day 1……….

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I can’t believe its been 2 weeks since I left Melbourne on this Journey of mine. Lets just hope the next 2 weeks fly by just as fast!

Yesterday was a rest day, and I got my pic lines changed, ready for the next part of this procedure “Chemotherapy”. This is the CRUCIAL part of the procedure. With NO Chemo, There is NO result, so it is essential.

This is what gets Rid of those cells where MS Live…..Bye Bye MS, Bye Bye.

I’m in control now!!

I spent yesterday getting myself mentally ready for the BIG day of chemo and was feeling a little drained to be honest. I always listen to my gut and I promised I wasn’t going to push my self and rest up when needed, so I did. Last night finished off with a Pizza delivery from bill, which was just what I needed.

With a goods nights sleep and a traditional Russian rice pudding breakfast, I was ready!

Day 1 is done….So far so good. One day at a time ……..

Thank you beautiful people for your continued love & support!!
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Poppy
xxoo

 

Apheresis – Stem Cell Collection Day………..

09_24_cancer1So today is the 1st day of collection for these little stem cells, where they will then be frozen, and ready to re infuse at a later date, after chemotherapy.

I was up at 5.30am this morning with bells on. I had the best sleep last night since I have been here, and was pacing up and down the hospital hallways, waiting for Dr Fedorenko to come around that corner. Got dressed, ate some breaky, shaved legs, got changed again, made a Skype call, paced up and down the hallways again. By this time it was 7.30am and I could hear the machine being wheeled up the hallway and then finally into my room.

Yes…..I was hooked up and my stemmies coming out. Some weird sensations during the process, numb mouth, and funny feelings through your body. Dr F warns you about all these feelings, so no need to hit panic mode. I will spend 5 hours on the machine and will wait for my results to see how many I collect today.

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If I collect 2 million stem cells today then, I’m done, other wise back again tomorrow to collect the remaining amount of stem cells to reach the 2 million mark. Either way I am happy and grateful to be here.

Thank you all for your continued love and support!!

Poppy xoxo

Day 5- Mobilization Stage……

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Stem cell mobilization is a process where stem cells are stimulated out of the bone marrow space (e.g, the hip bones and the chest bone)and into the bloodstream, so they are available for collection for future reinfusion.

For approximately four days (twice a day), I am given injections to stimulate my stem cell growth.  The most common side effect of  the mobilization process is mild-to-moderate bone pain or fever, which can be treated by pain killers if necessary.

My day starts with steroid infusion in the morning at around 11am, followed by the  shots at 11pm and 3am overnight. The nurse comes in, turns on the bright light, and with her thick Russian access says ” Injection”. If I ask her anything else she just looks at me blankly and at 3am in the morning I really cant be bothered pulling out my phone for google translate. So I just cover my eyes with one arm and stick the other arm out ready for the shot. All my trust has been handed over to Dr Fedorenko’s team here in Pirogov and they know exactly what they are doing

I am on my 2nd day of the mobilization stage and felt some bone pain and head achy all day. Nothing a Hot shower and a little pain killer in the bum couldn’t fix!!!

Today was a quiet day for me as I wast feeling up to leaving the hospital. I had some time to check out the hospital grounds and do a little sight seeing around here, which I hadn’t done yet. Even the hospital grounds are so beautiful. Their buildings are made with such great quality building materials and are built to last. Stunning gardens and a great place to just come and get fresh air and just read a book and pass some time, away from technology.

So another 2-3 days of mobilization and then we prepare for the stem cell collection!!!!!!!!! I feel ready for this, and am soooooooo happy that I am here. I know this is going to be a rough ride and i’m in the easy, earlly stage of this process. I promised my self that I will listen to my gut instinct as this is what gets me through a lot in life, and I will give ALL my trust to this amazing team here in Moscow. I wish I could clone Dr Fedorenko and his team and bring them back home .  Thank you for reading and for your continuous support!!

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