Below is our account of our time in Moscow Russia for HSCT as written by Samantha as a day by day diary on our Facebook Community page:
Photo’s can be found on Aaron Attacks MS Facebook Community Page.
** Aaron Attacks MS with HSCT @ The A.A. Maximov Hematology and Cell Therapy Department of the National Pirogov Medical Surgical CentreAA Maximov in Moscow, Russia under the care of Dr Fedorenko.
Treatment Dates: 22/09/2014 to 20/10/2014
Arrived in Moscow 21/09/2014 @2:30pm:
Hello Moscow, we are here!!
The drive from the airport was exciting, Aaron was looking forward to that part! Our driver was great, he took us the long way to show us a few landmarks. We are checked in and having a late dinner with a few other Aussie Carers and one American carer. Aaron admits to tomorrow at 11am – will update as we go!
Day 1: Aaron had a quiet day today settling into Pirogov. We met the amazing Dr Fedorenko and of course his gorgeous assistant Anastasia. Just one test today and paperwork and rest. We took a walk out in the gardens (they are amazing) and found the beautiful old church. Aaron is now all set in his room – he has eBay and Metallica playing on his laptop and I will head back to the hotel soon.
Day 2: Testing day today – Aaron had a semi relaxed day with an ultrasound, eye test, lung function testing and an x-ray. More testing again tomorrow. There are now 7 Aussie HSCT Warriors in Pirogov – at times it feels like an Aussie frat house in Russia Everyone is supporting each other making the experience so much easier for us as foreigners. The food is a culture shock for both of us – Aaron has been very brave and tried most foods he is served. This is his room for the next few weeks – once things get more serious he will progress upstairs to the third floor where stem cell collection happens and chemo/isolation will take place.
Day 3: More testing & a New Life Birthday for two brave HSCT Warriors.
Aaron had more testing today including a full brain and spinal MRI with contrast. He got taken thru the underground tunnels to get to adjoining building, quite an experience in itself! We also got to join two brave HSCT Warriors for their New Life Party upstairs on Level 3 – New Life begins around half way thru treatment when Stem Cells are transplanted – Happy Stemmie Birthday Em & Mary-Kay!
One more test tomorrow and then we get to sit down with Dr F on Friday to get the results and talk about predicted treatment results.
Oh and it was tongue for lunch today! Aaron knew it would happen and had been dreading it – nope he didn’t brave it this time but knows he will get it again and might try it then 😉
Day 4: Testing complete!! Quite an easy day for Aaron today – two final tests including another trip down thru the tunnels that adjoin the buildings underground (great as it is getting rather chilly out now!).
The weather is getting cooler, the days are between 9-15 degrees and the nights a little cooler dropping to 4 or 5 degrees with the wind making it feel even colder.
Down times are spent chatting on the ward with other patients and our Aussie Warrior family – we bid farewell to Aussie Warrior George today – he has completed treatment is exhausted but also relieved that his time here is coming to an end and he will be heading home to complete the recovery process WITHOUT MS!! Congrats George!
Pirogov’s grounds & buildings are very grand (as well as very secure) I pass thru a security building with guards on my way in and out and must show documents on each pass.
Tomorrow should be the start of HSCT for Aaron – after discussing the results of all the testing with Dr F he will begin Stem Cell Stimulation – bring it on we can’t wait to say goodbye to MS!
The last pic for today is Aaron in his ‘home’ corner having lunch – we are both struggling with the food although Aaron has been a LOT braver than me and has tried some of what he is being served.
Day 5: HSCT BEGINS!!
Spent the day waiting in Aaron’s Room & the lounge for our chat with Dr F – presented Anastasia with her HSCT Warrior T-shirt J
We have just had the go ahead from Dr F to begin treatment – stimulation shots begin tonight
Here we go – GOODBYE MS!
Day 6: Another IV Steroid drip for Aaron today and then Dr F suggested we go out for a free afternoon as tourists. The gorgeous Anastasia arranged a car to collect us from the Hospital and take us into Red Square – Aaron and I enjoyed the drive in and are intrigued by the cars and traffic and driving habits here in Moscow! There are so many manufactures and models we don’t have in Australia, as well as heaps of stretch hummers – bigger than the one’s back home and all different colours! The buildings throughout the city are grand and there is plenty to look at.
Red Square is just amazing – photo’s do not do it justice! You can almost feel the history oozing from the cobblestones and architecture. We only had an hour and not being a wheelchair friendly area made it difficult to see much but we are so grateful we were there and we were both captured by the beauty and the atmosphere.
Aaron has another two stimulation injections tonight at 11pm and 3am (imagine being woken from your sleep with a jab in the arm at 3am – shocked Aaron a little last night) and more steroids again tomorrow.
We are noticing the season change as the weather is getting cooler and the leaves are falling faster – the groundsmen are intriguing, they are constantly sweeping and collecting the leaves (with what Aaron has nicknamed their ‘Harry Potter Brooms’!) it is very Hogwarts LOL Today we asked one of them for a photo, which amused them and encouraged others to come over to see why we were taking photo’s of him, we told them they would be famous in Australia
Only 23 days to go!!!
Day 7: 1 week done!!
Last steroid infusion for Aaron today and last night of stem cell stimulation shots tonight. Bone pain is commonly experienced during this period as the stem cells are moving out from the bones into to the blood and Aaron was rather uncomfortable at times during the day – Dr F has told us “more pain = more stem cells – a good sign” which is reassuring.
Around lunch time Aaron had another reaction to medication, we had a short period of concern when he experienced cardiac arrhythmia or irregular heartbeat – at one point it reached 180bpm (normal is 60-90). Dr F was straight onto it and the staff were great. He put Aaron on a four hour drip to slow the heart rate and he was monitored constantly with ECG’s.
There are now 7 Aussies here in Russia for HSCT and I have been lucky enough to always have traveling companions for the trip to the hospital as well as for dinners. Tonight 7 of us had a lovey dinner together, 6 carers and Natalie who will admit tomorrow (yes feeling a little guilty with our loved ones in Pirogov but we do have to eat).
It is hard to believe we have already been here one week and that there are only 22 days to go!!
Day 8: Aaron had been dreading today, his intravenous line was put into his jugular in preperation for apheresis (or stem cell collection) tomorrow. He was anxious and nervous and had heart arrhythmia again as well as proving that if it’s going to be hard or difficult it will be for him. His heightened sensitivity from the MS means he feels every little thing magnified and the procedure wasn’t simple or pleasant for him. He was still rather uncomfortable this evening when I left for the night but needs the line to collect the stem cells – a necessary part of the HSCT process – no pain no gain right!
To explain the procedure a little more cells are collected through a process called stem cell mobilization. The process began with the twice nightly injections of a drug that stimulates the stem cells to leave the patient’s bone marrow and enter into the blood stream where they can be extracted. Before the mobilization can begin, an intravenous line (also called a central line) is placed in the patient’s jugular or chest depending on the best place based on ultrasound. A machine, called an apheresis machine, collects the blood that contains these cells. This process can take up to about four and a half hours and may have to be repeated several times to acquire the 2 million stem cells required.
Two more HSCT Warriors admitted to the ward today, Natalie from Australia and Matt from the UK. I met Natalie and her husband Paul at Kristy’s 2nd HSCT meeting back in April and we have been ‘talking’ online since. It felt just like catching up with old friends and has made the experience that little easier as we are all in this together! Aaron was chuffed to give Nat one of his ‘Azza Straps’ – effectively a large rubber band (made from 21″ tyre tubes cut up) which acts as a strap to lift the leg and assist with walking. A common symptom with MS is not only foot drop but lack of control over the muscles in the legs – ie you are telling your leg to lift but it just won’t. The strap has really helped Aaron and he was so glad he could share the mobility assistance with Nat!
I also visited our Warrior Family up on Level 3 in the ISO ward – Irene, Louise and Cheryl are completing the Chemo phase and Emma is in Isolation – we were able to talk thru the glass with Em and I know it lifts her spirits to see us and hear familiar voices.
Tomorrow starts early for Aaron – he will be connected to the apheresis machine from 8am and we hope for 2 million stemmies to be collected in that time – it is quite common to require more than one day and he won’t know till he gets thru the 4-5 hrs on the machine how many he got. Keep us in your thoughts tomorrow – COME ON STEMMIES!!!
21 days to go!!
Day 9: Aaron had a good start to the day, he was connected to the Apheresis machine around 8:30am to collect his Stem Cells and although he was a little uncomfortable the first few hours went smoothly. Dr F explained that he may experience tingling in the mouth and numbness during the process which he did.
About half way thru Aaron commented that his jaw and back were aching, he was feeling very hot, he was dizzy and his head was beginning to pound. This was not like any other headache he has experienced and his description had the pain and discomfort worse than any motorcycle accident he has had (and he has had many!)……Then it all started to get a little more serious and Dr F and his team seemed to take over the room. The machine was stopped and heart monitors were brought in. It was a flutter of activity surrounding him for the next few hours with Dr F, Anastasia and the nurses monitoring and reassuring Aaron and I that everything would be ok. They also assured us that this was not related to the HSCT or to MS and as it turns out there are hereditary heart problems in Aaron’s family. His anxiety as well as the procedure were causing some concern. He was given medication and a drip, monitored constantly and he settled for the afternoon.
It was an exhausting day for Aaron physically, and for both of us mentally and emotionally. During the whole time all the staff were absolutely wonderful and I will be eternally grateful for the presence of our Aussie Warrior Family for their support here on the ground in Moscow.
Around 5:30pm Dr F returned to the ward to give us the best news of the day – even after all the worry, doubt and concern about the treatment continuing and only spending 70% of the time on the Apheresis machine, Aaron produced 1.2 million Stem Cells!!! Had he been on the whole time he might have reach the 2 million target in one day! Dr F was very happy with this and so are we {insert happy dance here!}.
They will continue to monitor Aaron tomorrow and after a few additional tests in the morning they will put him on a Holter monitor (a machine that continuously records the heart’s rhythms) and then connect him back up to the Apheresis machine for a shorter time to collect the remaining Stemmies.
Dr F and Anastasia have both commented that they believe Aaron will have good results from this treatment and our faith in them remains strong.
BRING ON THOSE STEMMIES AARON!! And lets have a calmer day tomorrow xx
Only 20 days to go!
Day 10: More tests and heart monitoring for Aaron’s 2nd day on the Apheresis machine. The process is physically exhausting and when combined with all the emotions and fears we are experiencing it made for another long and stressful day here in Moscow.
Aaron was connected to the Apheresis machine from 8:30am till 12pm as well as being connected to heart monitors the entire time. Although he is having heart problems (hereditary not HSCT related) he was able to join us on Level 3 for ‘New Life’ celebrations with two Aussie Warriors. Happy New Life Birthday Warriors!!
Today was tongue for lunch which brightened the mood on the ward – not because they like eating it but because it creates conversations and photographs, which in turn bring laughter and lighten the atmosphere.
There are now 13 Aussies and 3 honorary Aussies (our new friends from the UK) including carers right here in Pirogov for HSCT! The bonds we are forming are strong and I am sure we have made lifelong friends – our common goal is to halt our loved ones MS – we truly are a Warrior Family.
After returning from the 3rd floor Dr F came to check in on Aaron, his central line was removed and we were given more great news – during the shortened time he was on the Apheresis machine today Aaron managed to produce another 1.85 million stem cells = 3.05 million stemmies in total!! Amazing results Aaron!!
Tonight will be a long night for us, although Aaron has more than enough stem cells to complete the transplant at this stage we are still unsure if the treatment will continue. He is connected to a halter monitor for 24hrs and then the risks will be weighed up tomorrow when Dr F comes to talk with us about the results of the monitoring.
Emotions are on edge and we are eternally grateful that we are not alone on this journey. Your thoughts, prayers, positive vibes and comments are invaluable and have given us extra strength to make it through the past few days. Please keep us in your thoughts for a positive result tomorrow, we can only hope that the risks are not too high and that Aaron’s treatment can continue. The alternative doesn’t bear thinking about just yet…….
Day 11: Today started with a chill, nothing like a bit of fresh air to wake you up. Followed by a sit down with Dr F with the results from the last 24hrs.
After going over all the results and consult notes from the cardiologist Dr F was happy to offer Aaron HSCT under the watchful eye of the team and on new heart meds.
LETS GET THIS TREATMENT UNDERWAY!!!!!
Thank you all for your good thoughts, prayers and positive vibes – keep them coming as our journey and challenges will now continue with chemo lines and a move to the third floor tomorrow or Saturday morning.
We have a free day today and Aaron is looking forward to some fresh air and a trip to Russia’s version of Auto One just down the road.
Special thanks to our Warrior Family here in Russia, their support and love is priceless and we will be forever grateful we are not alone here.
Day 12: After the stress and concern of the past few days an easy day was in order today and we are trying to keep Aaron as calm as possible so his heart has the best chance at withstanding the strain of the treatment over the next 2 weeks. He is exhausted and you can see the stress showing in his face. I know that it is affecting him more than he is showing. He is still pushing himself as he has done for so long – he is a proud man and I cannot blame him for that but he does need to give himself a break and not push past those limits like he does at home. We are about to head into the toughest part yet and he will need all the strength he can muster, it isn’t anywhere near over yet.
Just before lunch Anastasia came and collected Aaron to take him to have his central line inserted for Chemotherapy which will begin tomorrow (Saturday Russian time). The local stung but the lines went in much easier this time as he wasn’t as tense. Shortly after returning to his room he was in a fair bit of pain and was given meds via the lines – much easier and more direct than a tablet or a needle and he felt relief quite quick.
I knew he was feeling better when he asked for an ice-cream (yep it’s 4 degrees and he wants ice-cream lol) so I ventured out to the little ‘corner’ type store across from the hospital with Matt’s brother Bryn (here from the UK for HSCT).
We had a Skype call home with Jake and my Dad today which was great for Aaron’s spirits and then settled Aaron in his room with a movie for the night.
I have included a few pics in today’s post that are from yesterday when Aaron and I ventured out for half an hour as well as picks from attending another stem cell birthday upstairs….once Aaron moves onto the third floor tomorrow I will be visiting in full scrubs as it is the isolation ward.
Only 17 days to go!!
Day 13: Today started early as it was time for Aaron to make the move up to the third floor where the isolation rooms are located. I packed his bags and gathered all his things and then we waited while the rooms were cleaned and prepared. Aaron has taken Warrior Emma’s old room and Em has been released from ISO and is downstairs awaiting departure back to Oz. While we were waiting for the big move Warrior Natalie’s husband Paul and I shaved Aaron’s head in preparation for it falling out after his stem cells are re-infused and engraftment begins.
After about an hour sitting in the patients lounge area talking with some of our Warrior Family (as well as a couple from Michigan that are here to collect their sister) we were taken upstairs and settled Aaron into his new room where he will now be for the next few weeks. It is an ISO room but until he has had his New Life Birthday and then his levels drop he is allowed to have the doors open and I am allowed to visit.
The first of four days of chemo started late today due to the move, he finished his first round about 5pm and will have 2 flushes after each chemo dose – tonight the flushes will be at 7pm and 10pm. Tomorrow they will start chemo earlier so that the day is not so long. This is the ‘good part’ … I can hear you all thinking “are you mad saying Chemo is good Sam?” I’m not meaning good as in fun and not good as in ‘good for Aaron’ but good because the chemo is what will kill the MS!!!
This can be one of the toughest parts of the actual treatment process for some people, everyone is different so we can’t assume or really know how Aaron will react to the chemo. Once his first dose was complete he had the constant urge to use the bathroom (experienced by many if not all the patients I have spoken to so far) a little dizziness and a heavy headed feeling. All in all he wasn’t feeling too crash hot when I left for the night.
We have a LONG way to go on this journey, chemo then re-infusion then isolation and then the hardest part of all – returning home immune deficient (in other words Aaron will have no immune system). It will be a hard slog on the other end to re-build Aaron’s strength and immunity but we will take it all as it comes, just as we are our time here in Pirogov.
Only 16 days to go – we are almost half way!!
Day 14: Aaron didn’t sleep a wink last night, partly from the chemo affects and partly due to being extremely hot in his room. All the rooms have water heaters and they feel like they are set for -20 temps. When you are as heat intolerant as Aaron it is not only very uncomfortable but it enhances his symptoms and therefore makes him weaker and less able to stay active and mobile – as well as causing unnecessary anxiety. During Dr F’s morning rounds we talked about a room change and or having the heater turned down or off.
Round 2 of chemo started at 10am and while he was on the drip I moved all Aaron’s things into another room where he is all set now for the rest of his stay here. He feels a lot more comfortable and the anxiety has lessened. To get thru this treatment he needs a good mental attitude and a strong heart, reducing unnecessary stress will really help with that.
After checking out his new room and eating a little bit of lunch we went for a visit down stairs to see our Warrior family on level 2. Aaron’s mood brightened and he had a chat with Warrior Nat’s hubby Paul and I caught up with the girls. We have met and made some great friends during this journey and we plan to not only stay in touch to follow progress but to catch up again down the track.
The next Aussie Warrior arrives at Pirogov tomorrow (Monday the 6th) bringing the number of Australians here in Moscow for HSCT to 8! Today there were 5 patients up on the ISO ward and 3 on level 2. Add in the careers/partners/parents/friends and there can be up to 15 Australians at the hospital at any given time! If you also count in patients and carers from the UK and the US and there are 21 English speaking visitors, I believe this could be a record – kudos to the staff for being so accepting and patient with us. They are going above and beyond their job descriptions and are dedicated to the hospital and Dr F – who has not had a day off the whole time we have been here (neither has Anastasia!) and when we asked when he was having a day off he said December…..he truly is an amazing Dr and is worth his weight plus more in gold and we truly are so blessed to be here having this treatment and halting Aaron’s MS.
The chemo started to affect Aaron in the late afternoon. He was feeling nausea, heavy headed and generally just ‘not right’ – all to be expected with this type of treatment and we know this means that the chemo drugs are doing their job and killing the MS (as well as his dodgy immune system!) A quick press on the buzzer, in comes Olga his nurse and gives him a dose thru his central lines for the nausea and I then set him up with a movie on his laptop for the evening. He wasn’t feeling much like dinner when it arrived tonight but managed to get some mash potato eaten as he needs the energy.
2 more days of chemo to go; you are doing it Aaron! I am so proud of the way he is holding up and withstanding the rigors of HSCT. I know it is not easy for him and that he is doing this for himself as much as he is for Jacob and I. Aaron is a fighter and he is refusing to give in to this debilitating disease – GO WARRIOR GO!
ONLY 15 DAYS TO GO!! We have reached the halfway point J
Day 15: Another chemo day today, the third of four for Aaron and a better day all round. After having sleep deprivation (which is common with this treatment) he took a sleeping tablet administered by the hospital last night and had the best night sleep he has had in many months.
The days all seem to be blending into one now and Aaron and I spent most of the day in his room talking, surfing the net and skyping home, as well as dosing out what feels like never ending medication. Aaron is now on over 20 tablets per day and I am sure he rattles when he walks.
Dr F visited mid-morning to check on Aaron, he always has a smile on his face and is so caring and concerned not only about his patients but also the carers. His handshakes are always so genuine and he means it when he asks if everything is alright! Anastasia was also on the ward throughout the day and is quick to assist with anything that is needed or to translate if there are communication problems. They are both so dedicated and truly are our shining lights, we cannot say enough how grateful we are to be here in their country being cared for so well.
With only one day of chemo to go everything is going to plan and Aaron has been lucky (for once!) not experiencing a great deal of nausea. Any he has had is easily controlled with an injection thru his central lines which equals quick relief for him.
Our Aussie Warrior Family (and honorary Aussies) here in Moscow are amazing, I do not know how any of us would cope without each others support, advice and companionship. Each day we travel in on the tram with each other and we all passed along valuable information about travel, money, food and shopping. As well as being there for each other as we go thru the treatment, that includes the gamut of emotions that go along with it!
We will be sad to say farewell to one of the Warriors and her beautiful carers tomorrow – we wish her all the very best as she heads home to her gorgeous family to recover and start the hardest part of the whole journey: returning home and months of recuperation and rehab. Be strong Warrior, we are right behind you!! Two weeks today and we will be flying home ourselves – back to the loving arms of our family (I can’t wait to get my loving arms around our son who I am missing terribly) and back to recover and recuperate over many months to get our life back.
Today’s photos are: the sign that is on Aaron’s door advising the staff who is in the room and what they are being treated for etc.
Aaron’s wall of inspiration, the guard gates we enter thru daily (we must show a pass to enter and exit and the guards are now recognising us). One of the meals that are served regularly and finally a picture of us in the amazing lift.
Only 14 days to go!!
Day 16: Today was the last day of chemo for Aaron, another quiet day spent on the 5 chemo bottles feeding him through his central line followed by 2 flushes in the afternoon/evening. They are pumping 2800mls of fluids into him daily and Aaron has described the feeling of being on chemo as “weird”, he said “it is like being tipsy without drinking” and that he cannot remember ever pissing so much!
Small things can make a big difference when you have been struggling and pushing yourself for as long as Aaron has. Over the past few weeks in Pirogov I believe that Aaron’s positive outlook about HSCT and his determination to beat this disease has made a difference to how he has responded to each stage. HSCT is not an easy thing to put yourself through and it isn’t to be taken lightly. It certainly isn’t for everyone but I believe everyone deserves the right to make that decision for themselves. I support those that are willing to try to halt this insidious disease and give themselves and their loved ones a chance at a better quality of life. GO HSCT WARRIORS GO!
We spent the day talking together in Aaron’s room and had a walk around home on Skype with Jacob. It was really great to “spend some time with him”. We also spoke to my Dad and got a little dose of home to keep us going. We saw the Australian sun shining, the gumtrees and our puppy. We both miss them all terribly but also know that we are over half way and will be home before we know it.
Jake and my Father met Dr F and Anastasia on the Skype call and Dad told Dr F he is “in love with him”! There is a continual outpouring of love and admiration for them both and they totally deserve it!! They both work tirelessly and are only ever concerned with the best for their patients. Jake was being quite the comedian during the call and showed Anastasia his horse mask – we were all laughing and the smiles really brightened the room.
The weather has started to get that little bit colder now, it was -3 degrees this morning and reached a top of 6 degrees throughout the day. The wind chill gets you when you walk outside and we are all rugged up and waiting to see if it gets cold enough to snow while we are here. It has been beautiful watching the autumn leaves falling from the trees and the season changing. We are hoping it is not as cold tomorrow so Aaron can get outside before he is “locked up” in ISO for possibly 8-10 days.
Tomorrow is a rest day for Aaron followed by his and Troy’s New Life Birthday and stem cell re-infusion on Thursday – then we are really on the home stretch.
Only 13 days to go!!
Day 17: After his four days of chemo Aaron had a rest day today. Only 1200mls of fluids, electrolytes, magnesium as well as the 20+ tablets he is still taking.
Dr F visited to check Aaron’s heart and his blood pressure etc. there was a slight indication that Aaron’s heart is still under pressure but nothing to be overly concerned about. Dr F is always so calming and reassuring and as he was leaving he said “two weeks and you will be home recovering Aaron, do not worry” – how exciting is that!
Just before lunch we went for a walk outside in the fresh air with Troy and Neil for the boy’s last outing before isolation. We all enjoyed the crisp air and the beautiful warmth of the sunshine and it brought a smile to Aaron’s face and brightened him while we were out. It was nice to feel slightly normal for an hour or so.
Throughout the day Aaron became very tired and a lot weaker, he described it as feeling buggered and drained or like a bus had run over him, he also said it felt like he hadn’t slept for weeks. His immune system is depleted from the chemo and he has 3.05 million less stem cells so his body is working hard – feeling so worn out is expected. Plus our walk in the gardens increased his fatigue (one of the symptoms we are both hoping will be gone or decreased with the HSCT).
Back up to the ward for lunch, which wasn’t too appealing to Aaron. Today was tongue and fish soup We then rested in his room for the remainder of the day – after all it is a rest day. Another Skype call with Jacob and Dad as well as my Mum. We are so grateful for the internet and technology which is connecting us with home.
Tomorrow is a big day, its Aaron’s HSCT New Life Birthday His stem cells will be re-infused around 10am followed by a rest and then a celebration – but more on that tomorrow after the event!
Only 12 days to go!!
Day 18: Today was transplant day or Aaron’s New Life Birthday!! What an emotional day! We started early preparing Aaron’s room for the procedure, clearing out all his bags, computer and bits and pieces. The nurses set up the heart monitor and a sterile table and then we waited. Aaron was able to have a good chat with a mate back home before the transplant (and discovered he now shares his re-birthday with his wife as well as my dear departed grandfather!) the call helped pass the time, relax him and also put him in a good frame of mind for the day ahead.
At around 12:30 Dr F dropped Aaron’s stem cells off outside his room and came in to let us know what would be happening over the next hour. Aaron was hooked up to the heart monitor as well as having fluids, electrolytes, antihistamine and other medications through his central line. He fell asleep for a short time after not having slept much the night before as well as the effects of the antihistamine. The whole HSCT procedure is quite tiring and his body has been hard at work fighting to HALT his MS!
Around 1:30pm the room got really full with Dr F, Anastasia, 3 nurses and me (Sam) in the room for the re-infusion of his 3.05 million stem cells. Dr F showed us the bag with Aaron’s name in Russian that had his stem cells in it and they proceeded to put them into 5 or 6 syringes and then injected them back into his blood through his central line.
The whole time Dr F kept talking to Aaron asking how he was feeling and checking his pulse rate. He felt a bit dizzy, his heart rate dropped quite low, he got a slight ache in his jaw, tingling in his hands and a mild headache. 7 mins later it was all finished, his heart rate returned to normal and his stem cells were back in his blood and working their way back to his bone marrow. Go stemmies go!!
They continued to monitor Aaron’s heart for over an hour after the re-infusion and he was on oxygen the whole time as well as having more fluids. Dr F & Anastasia returned to the room regularly to check he was doing ok and to assure us that everything was normal. They encouraged Aaron to get up about two hours after the infusion was completed.
At 4pm we gathered in the patients lounge for Aaron’s ‘New Life’ celebration that he shared with Troy his new ‘stemmie brother’. Dr F and Anastasia have a ceremony that is very special to their patients with a speech as well as presenting the boys with their ‘New Life’ pins. The pin is a symbol that joins them in the ‘New Life’ patients group here at Pirogov a touching gesture. It was a very moving few minutes and I am so grateful that we were joined by our Warrior Family to help us celebrate this special occasion. The dry ice that has stored their stem cells is thrown out as a symbol of ‘throwing away the old’ and moving forward with new life!
After the ceremony we stayed in the lounge and chatted. It was very relaxing and the whole day will forever hold a special place on this journey and in our lives. When we returned to Aaron’s room he was able to Skype with his Mum and talk with her about the day’s events – that too was very important and special for both of them.
During Aaron’s dinner (no not tongue tonight) we read through all the amazing comments together and Aaron has asked me to pass along a few things from him. He will be forever grateful to everyone that has helped to get him here to Russia for HSCT – something we should be able to get on home soil but can’t. Your encouraging words, your prayers and positive thoughts did not go un-noticed. All of you have all helped keep him strong and inspired him to not give up. He feels blessed to have this opportunity and he intends to make the most of it! THANK YOU!
Tomorrow will be spent resting and waiting for his leukocyte levels to drop, Dr F told us this is normally around two days. Once they reach the required level he will go into isolation.
Huge thanks to Paul Pacaud & Matt Perry for the photo’s!
Only 11 days to go!!
Day 19: The past 48hrs have been long. With all the fluids and steroids and other medications that they are pumping into Aaron he has found it hard to sleep.
Today was a day of waiting for Aaron’s leukocyte levels to drop – once they reach less than 1 million (written as less than .5) he will be ‘locked up’ in isolation – probably Saturday afternoon Russian time.
While he was able we had a walk around the ward and visited a few of the other Warriors, had a few Skype calls home to Sydney and we had as many cuddles as we could.
Late in the afternoon Dr F visited and explained how they will record Aaron’s Hemoglobin, Leukocytes and Platelets levels over the next 6-10 days. He checked blood pressure and pulse and was happy with Aaron’s progress so far.
Before I left for the day we prepped his room, packed his bags up and now we wait for his levels to drop.
Only 10 days to go (so long as Aaron gets thru isolation in time!!)
Day 20: Another day of waiting for Aaron’s levels to drop low enough for isolation to begin. He has blood taken each morning and is given fluids and electrolytes twice daily via his central line as well as the endless tablets throughout the day.
Dr F has assured us that this is normal and leukocyte levels can normally drop anywhere from Day +1 to Day +3 which is tomorrow (Sunday). He seems satisfied that all Aaron’s other stats are normal and he is continuing to monitor his heart daily with an ECG. He will also be keeping a close eye on his platelets and haemoglobin levels. We learned that transfusions are common in approx. 50% of cases, a slight relief however we would both obviously prefer it not to happen.
It is also ‘normal’ to feel weaker and this has happened to Aaron, his balance and strength in his legs isn’t anywhere near what it has been the past week. That was the effects of the steroids that also kept him awake, not a good combination being tired and weak and off balance. He had a few falls in the last 24 hrs and managed to cut his leg without realising. We didn’t notice it for maybe a few hours and he had blood down his shin and on his shoes. The nurse was quick to clean it up and bandage it. Infection is the last thing he needs right now.
Once again we spent the day Skyping home with family and friends which really helps to pass the time as well as bringing us closer to the ones we are missing the most. Aaron had a walk around the ward while he is still able – he is persevering and wants to stay as mobile as he can, he refuses to give in! I admire his determination and drive and hope that he isn’t pushing himself too much.
Positive thoughts, vibes and prayers that Aaron’s leukocyte levels have dropped sufficiently by tomorrow so he can get ‘locked down’ in his room for ISO and that his platelets and haemoglobin levels rise.
Only 9 Days to our scheduled departure – fingers and toes crossed that ISO goes quick!
Day 21: Another restless night for Aaron last night. He has fluids being pumped into him each day and a common side effect for most patients is constantly getting up during the night which equals disturbed sleep patterns. He was exhausted today, it was the last day he had his doors open and the last morning I was allowed in his room with him.
He had more fluids during the morning and of course more tablets all day and his heart rate and blood pressure are still being checked regularly. We spent the morning on Skype with family and then around 11am Dr F visited to check Aaron’s heart and blood pressure and to give us his blood levels for Day +3 after re-infusion day. His leukocytes have dropped to 0.53 which means isolation will be starting today. Dr F believes going on past history and due to his stem cell collection numbers being so high that the engraftment process should take anywhere from 3-5 days.
Around 12:30pm the lovely nurse Irena came in with new bedding and clothes for Aaron to wear, took away all his bags leaving him with just his computer, phone and a few personal items. She explained what he needed to do with the alcohol wash he will be using daily and I was given one last opportunity for a hug.
When I left for the day Aaron’s room was being cleaned and then the doors to his room were closed and he is officially in isolation for the next 6-7 days (fingers and toes all crossed).
The next stage is waiting for his leukocyte numbers to rise again and for engraftment to take place, an indication that this is happening will be when his hair starts to fall out and obviously from his blood results daily.
This week will be the hardest time for Aaron as he will be alone in his room and dependent on himself and the nurses. He is getting weaker and has had a few falls and is unsteady on his feet. I will be visiting during the day to talk to him thru the glass doors as well as staying in contact via Skype and messages.
Stay strong Aaron we are all sending strength, love and positive vibes for a speedy time in ISO – this is all part of halting the MS and starting the long recovery process as well as the journey home!
Only 8 days to go!!!
Day 22: Aaron spent his 2nd day in isolation today. He had a good drop in his blood levels which is what should happen before they begin to rise again and we wait for engraftment to take place which is anywhere from day +4 to day +6 after re-infusion.
Isolation is a lonely place and after being here 3 weeks the time is starting to take it’s toll on Aaron. The treatment is exhausting mentally and physically and the battle does not end when we get home. It will be a long hard road on the other side until Aaron’s immune system re-builds and his strength returns. We know it will not be easy and we are hopeful that all of this will all be worth it.
More fluids, more tablets and more time behind the glass doors. I visited in the morning and rather than shouting thru the doors we used Skype to talk – we even had a chat with Jake and joined him in on the call. I know my boys miss each other and I am now missing them both.
This time next week we will be in the air and on our way back home and we are both almost counting the hours.
7 days to go!
Day 23: Aaron’s 3rd day locked down in ISO or Day +5 since his infusion – his leukocyte levels continue to drop which is what is expected. Engraftment could start any day now and all we can do is wait patiently and pray those little stemmies are doing their job and working their way back into where they need to be – in the bones. Go stemmies go!
Along with engraftment comes hair loss and also bone pain, we can only hope that it is not too painful for Aaron as this is one of the side affects that can be the most unpleasant and can last for some time after we are home.
Aaron’s days consist of taking lots and lots of tablets, eating the 4 meals he is served (well eating some of them – no he doesn’t fancy the fish, fish soup or the tongue dishes and I don’t blame him!). He has to exit his room once a day and go to the bathroom when the cleaner comes. He washes himself with the alcohol wash they provide which we are sure is vodka – note: do not use the wrong bottles on the wrong parts of your body, large is for face and privates and small for the rest of your body! He has two courses of fluids thru the day and a daily visit from Dr F as well as the lovely Anastasia.
Aaron was physically more exhausted today and is also unsteady on his feet which makes washing his dishes difficult and a hard chore. He slept some of the time and skyped some of the time and chatted to me when I visited in the afternoon.
His knew nickname is now ‘Kung fu Panda’ as they have him in an all white scrub type outfit while he is isolated. He is allowed his underwear, undershirts and socks – a clean pair daily.
All that is left now is for Aaron’s leukocyte levels to begin to rise so that engraftment can take place and then get high enough for him to be released from behind the glass door. We need positive thoughts, prayers and vibes that this happens soon so that he can come out of ISO with at least a day to spare. He will need one full day to get a big dose of steroids and his Rituximab and then we can be on that plane next Monday!
Only 6 days to go!!
Day 24: Another day of isolation for Aaron, his 4th day (Day +6 from New Life). He spent it the same as the last few days having more tablets, two rounds of drips and obs checked regularly as well as sleeping throughout the day. Dr F is happy with the way things are going and has told us that he would expect engraftment to take place on Friday or Saturday – c’mon stemmies c’mon!
Once engraftment takes place Aaron can come out of the isolation room and breath the fresh air outside, which I am sure he is looking forward too. Only a few more days to go Aaron, you can do this, you are one of the strongest people I know, your determination and will power is something to be proud of – you have almost done it and we are on the home stretch now.
The food is still challenging – the fish soup isn’t very palatable….in fact I would go as far to say it is horrendous and has been fed to the sewers many times over his stay, today was no exception. Thank goodness for 2-minute noodles, Vegemite on bread and Aeroplane jelly – that and the porridge, depending on which variety is served it has generally has been a welcomed meal. Aaron also has Nutri-Drinks (energy drinks) stacked up in the fridge that he has twice a day.
Tomorrow there is another HSCT New Life Birthday on the ward for Nat and Matt and although Aaron can’t be there in person we will try to Skype him in on the celebration so he too can support his Warrior friends as they take the next step towards re-booting their lives.
Only 5 days to go!!!
Day 25: Aaron made it through Day 5 of isolation and is now one week or Day +7 into his New Life. Much of the same today, two rounds of drips more tablets and of course challenging Russian cuisine – thankfully I was there to ward off the fish dinner and managed to score him an extra piece of bread for his vegemite, I also made him 2-minute noodles to fill the gap left after his ‘smashed potatoes’ and mushy pea dinner (yes they actually call them smashed potatoes not mashed).
Dr F visited while I was on a Skype call in the morning and is more than happy with Aaron’s progress. His Leukocytes levels are on the rise and Dr F predicts engraftment will be either tomorrow (Friday) or Saturday. He even had a pull at some of Aaron’s hair and a few bits came out – a good indication that engraftment will be soon. Aaron told Dr F he would like just the grey ones to fall out – sorry honey but they will probably all fall out.
It is getting pretty boring for Aaron behind the glass in ISO but thankfully the boredom was broken for a short time in the afternoon. It was a special day on level 3 with four patients celebrating their HSCT New Life including the touching ceremony with Dr F and Anastasia late in the day. Thanks once again to technology Aaron was able to join us via Skype from his room to support his fellow Warriors Natalie and Matt – he even donned a mask for the occasion complete with his very own hand drawn moustache It was very special and I know his new Warrior friends appreciated his effort.
It is hard to believe that the Russian part of our HSCT journey is almost complete. We are hoping that Aaron’s Leukocyte levels take a massive leap over night and that engraftment takes place in the next 2 days setting us right on course for our departure from Pirogov on Monday. We need strong prayers, positive vibes and good thoughts to get us over the line – and we know we can count on you all for that!
The weather is getting much colder here in Moscow with rain and frost and temps down to minus 5 predicted in the next few days – just in time for us to pack our bags and make the long trip home
Only 4 days to go!!
Day 26: Today was to be Aaron’s 6th day of isolation. It started the same as the other ISO days – drips, meds and sleeping. Aaron is exhausted and his body has been working overtime to get his stem cells back to the bones and with that comes pain and discomfort which he is also experiencing. He is also on a big mixture of medications including heart meds, antivirals, steroids and more add to that he has had chemo poison going through his body and his system is fighting from every direction.
Around 1pm Dr F came in with Aaron’s blood count for the day, he opened Aaron’s door but did not close it behind him – this was a good sign! Aaron’s leukocytes took a massive leap over night from 0.52 to 3.59 which means HE IS OUT OF ISO in 5 days!!! Dr F checked if Aaron’s hair was falling out – he had another pick and pulled out a few strands and Aaron again said he would prefer to only loose the greys! That got a good chuckle from Dr F. He has encouraged Aaron to have a walk on the ward (with a mask) to keep active and re-introduce himself back into ‘the population’. Tomorrow he should be allowed outside for fresh air. However I am sure if we do head outside that once he steps out into the weather it will be too cold, temps here have dropped radically in the last few days. It is currently minus one outside with snow showers and tomorrow it is predicted to drop to -4.
Aaron’s next few days will be spent getting more meds, more fluids and a large dose of steroids to get him through the next few weeks.
We are now about to embark on the next part of this massive journey. On Monday afternoon we will start the 22hr trip home with two flights and a stopover in Dubai. Then comes the hardest part of all – the next few months of re-building Aaron’s immunity and working to getting his strength back.
The road ahead is a long one but it is now filled with hope. We will be eternally grateful to Dr F, Anastasia and all the staff at Pirogov for the gift of HSCT. Also to you our supporters, not only for helping to get us here but for supporting us while we were here and encouraging us not to give up on that hope!
Only 3 days to departure!!
Day 27: Today was Aaron’s first full day out of isolation and is classed as Day 0+9. He spent the day in his room resting and was attached to a drip for 5 hours having Steroids and Rituximab (a monoclonal antibody targeted against the CD20 antigen which is linked to MS disease activity. It is a potent therapeutic tool often used alone or in combination with chemotherapy/HSCT resulting in a significantly improved response rate compared with chemotherapy alone). He has been experiencing lower back pain in the bones which is quite common with this procedure and just didn’t feel himself today.
While he was connected to his intravenous lines he had a few Skype calls with Family & friends, we talked and Aaron surfed the internet. He also got to try a Russian Picnic bar, which went down a treat and we both preferred them hands down over the Aussie version! We also looked for signs of more hair loss which is beginning now and will continue over the coming days.
During our time here in Moscow we have become more and more aware of how very lucky Aaron has been to have the opportunity to receive HSCT at Pirogov under the amazing care of Dr Fedorenko and his team. It is a treatment option that should be more widely available to anyone with MS – and in their own country. HSCT is not on offer in Australia (nor many other countries) other than under trial conditions and is restricted to very tight criteria. It is also available in a small selection of countries for a much higher price and for a much longer treatment period with some centres using the ‘out patient’ option. This has made Russia seem like a walk in the park in comparison.
We officially have just 2 sleeps until we leave Moscow and the care of Pirogov to head home to our family and friends…we cannot wait! We are so very grateful to Dr F, Anastasia and our HSCT Pirogov family for helping make this part of the journey so much more bearable than it could’ve been had we been here alone. I will be eternally grateful to the carers and friends I have spent my time traveling and eating and learning and socialising with – as will Aaron towards his HSCT brothers and sisters that have shared ‘New Life’ with him.
Can you believe there are only 2 days to go!!
Day 28: Aaron’s last full day at Pirogov – he is now officially a Hematopoietic Stem Cell Transplant Survivor!
Today was a day of rest – Aaron is exhausted and is also buzzing from the large dose of steroids yesterday plus the Rituxamab. He hasn’t slept much and even sleeping tablets aren’t helping much at the moment.
Tomorrow we will see Dr F in the morning for Aaron’s discharge and then the hospitals driver will collect us at 12pm to drive us to DME airport for the long 22.5hr trip home to Australia.
Thank you Pirogov, Dr F, Anastasia and all the wonderful staff for caring for Aaron during this part of the HSCT journey. Thank you to all the patients and carers that have become our friends and have helped us and supported us this month. Thank you to Kristy Cruise for sharing her story and inspiring us and so many others to take the giant leap of faith to travel across to the other side of the world to HALT MS. And thank you to all our supporters here on the AAMS Community page.
We will be leaving one thing behind tomorrow: Aaron’s MS.
Sydney here we come!
Photo’s can be found on AaronAttacksMS Facebook Community page.
Aaron Attacks MS 