Russian HSCT Comrades

Our journey to Russia for HSCT was daunting but as we headed off for a major medical procedure in a foreign country we had the benefit of knowing other brave HSCT Warriors that had forged the way before us. Through blogs and Facebook groups and private messages we learned about so many amazingly courageous MS’ers from Australia and abroad that had already paved the way. It takes a certain person to open their lives up, to share their journey and their experiences, we are so very grateful there are people that have and still do. The tips, hints and tricks that are shared have made the whole journey so much easier for us and the many others that follow us.

One of those amazing people is Kristy Cruise. Kristy not only inspired us but hundreds of people worldwide to take control of their own health and in particular to seek HSCT. She invited the world into her life, her family’s lives and shared her journey to fight for the right for the chance at halting MS. She has been an inspiration to us since we first came across her story as it was unfolding in real time back in 2013 on a Facebook group. Months later when the ads aired for her 60 Minutes ‘Russian Roulette’ story we finally took the plunge and after 18 months of research we followed hers and others very brave steps. 

Kristy Cruise -
our HSCT Queen

We contacted Dr F and booked Aaron in as a patient at The A.A. Maximov Hematology and Cell Therapy Department of the National Pirogov Medical Surgical Centre in Moscow Russia – the start of the long journey we are on now. 

Kristy may not have been in Russia with us physically but her advice and support prior, during and after has been and continues to be priceless. We hope that by following her selfless example and sharing our story we might reach just a fraction of those Kristy has. I also hope that by being a Warrior Wife I not only paid it forward in Russia a little but also through writing Aaron’s blog and sharing the entire journey on the net.

Back to my Russian HSCT Warrior Family – my comrades in Russia for 28 days :) We were so blessed that there were Aussies already in Moscow when we arrived. Our very first night we were welcomed to the Vega by Libby and her Friend Jenny. Libby’s daughter Emma was another Aussie already in Russia for HSCT. They invited us to dinner where we met two other carers that were just about to leave Moscow. It was a warm and friendly welcome to a foreign country and made the first night a whole lot less daunting.

Jenny Libby & I at the Vega on the day they departed Moscow

Emma, Aaron, Me with Mary Kaye's Brother & sister in Law

The first Monday as Aaron admitted to Pirogov we were welcomed to the hospital by Emma. Em and I met online, we followed each other’s fundraising, and we shared our tips and hints supporting each for the months leading up to setting off for Russia. We were all anxious to meet in person and big hugs were had that day. I will be forever grateful to Em, Libby and Jenny for their friendship & support as well as the important role they played in our journey in Moscow on so many levels! My first day traveling to the hospital alone Libby & Jen showed me the ropes which set me on path for transport for the remainder of the month – I was only too happy to pay it forward and show those that followed the same ropes.

HSCT Warriors Aaron & Emma

There were also 3 other Aussies ladies already in Pirogov including Irene another online HSCT friend and Mary Kay from Michigan.  Meeting some of our ‘HSCT Warrior Family’ in person gave both Aaron and I strength in the early days and it was lovely to have familiar voices to speak with each day. (There were also another 2 ladies on the ward, Louise and Cheryll from Australia, who were on the same schedule as Irene). We were so lucky to be included in Em, Mary-Kay, Irene, Louise and Cheryll’s New life Birthday celebrations.

The day after we admitted Aaron to Pirogov we were joined by Troy and his carers Neil and Marilyn. Again we had been speaking to Troy online as well as on the phone in the months leading up to Russia and I have been online friends with his Mother Anne for a few years now – our connection being through MS. Aaron and Troy would become Stem Cell Buddies as their treatment took on the same schedule. They experienced everything from testing to stimulation shots to Apheresis (stem cell collection) at the same time as well as sharing chemo days and the big transplant day. Experiencing the traditional New Life Birthday celebrations side by side highlighted their journey to HALT MS together.

 

Neil and Marilyn would become my travel buddies, dinner companions, supporters, helpers as well as my friends during the month we spent together. We were all staying at the Vega, we traveled to and from Pirogov together and we even took a little time out to enjoy Moscow as tourists together. I will be forever grateful to Marilyn for almost insisting we attend the Bolshoi Ballet & Red Square by Night – truly a highlight of my time in Moscow and an experience I will NEVER forget. I would have had many more lonely nights and been by myself for a lot more of my time in Moscow had I not had their companionship.

Marilyn, Neil & I on our way to Red Square on the Metro

Neil, Marilyn, Frank & I in front of St Basil's Cathedral

 On my first weekend in Russia I was joined at the Vega by our new friends and fellow HSCT’er Natalie & her husband Paul. I met Nat & Paul briefly in April when I attended Kristy’s 2^nd HSCT Forum in QLD. We have chatted on line a lot since then and it was lovely to catch up with them again. This time in Moscow just as we had planned 6 months earlier… when it all felt so far away! It was like seeing old friends and meeting new ones all in one xx We spent the next three weeks together bonding and sharing a unique experience in a unique part of the world. All while learning more about each other and sharing stories about our respective families. I missed Nat & Paul for the first few weeks home, actually I still miss them! They are such special people and I was blessed to spend such an intense time of my life with them. I hope they know how important they were to me during our time in Russia and that I still carry the strength, wisdom, advice and friendship they shared with me now.

Libby, Jenny, Paul, Natalie, Me, Marilyn & Neil

Warriors Aaron & Nat with their Azza Straps!

The day Nat admitted to Pirogov during Aaron’s 2^nd week we were also joined by Matt & his girlfriend Laura from the UK. They had not been expecting a support crew and it was really nice to welcome them to Pirogov and adopt them as ‘honorary Aussies’ showing them the ropes. A few days later our support group extended again when Matt’s brother Bryn arrived from Dubai and was also welcomed into our ‘HSCT Pirogov/Vega Family’. For a few days there were 13 Aussies and our 3 honorary Aussies in Moscow for HSCT.

Paul & Laura

Aaron visiting Matt in ISO to say farewell
on our last day

During my time in Russia I shared all the highs and the lows with my new friends. I was emotional on a whole new level in a whole new world and I was blessed that they welcomed me into their lives and supported me in so many ways. Our new friends made our time in such a foreign land that much more comfortable and a lot less daunting than it could’ve been. The bonds we formed were strong and I am sure we have made lifelong friends.

Marilyn, Paul, Aaron, Laura & Bryn
on our last day at Pirogov

If I didn’t say it enough before I left -
Thank you from the bottom of my heart Warrior Family xx