After HSCT – Home, Healing & Beyond (Oct ’14 – Nov ’14)
Thursday 23/10/2014 (Day0 +14) Day 2 at home:
After a long 22.5hrs in transit, followed by just under an hour drive we arrived home just after midnight Tuesday night. It sure was great being greeted by Jacob (who has grown!) and Harry (Sam’s Dad) as well as Shelby Dog – BIG hugs all round. Jet lag has set in and our body clocks are still 7hrs behind us in Russia!
Aaron traveled as well as can be expected from someone that has been thru Chemo and Stem Cell Treatment. He is very weak and fatigued as well as super tired. He is also bored and stuck in the house – it’s now time to re-coup, relax and then get into a new routine here at home.
Our aim with getting HSCT in Russia was to HALT Aaron’s MS – how successful it was can only been known with time. We always said that if he lost symptoms or had improvements that would be a genuine bonus. So to judge it now is far too early as the HSCT roller-coaster is a long and bumpy ride.
That said it appears that Aaron has lost one symptom and that in itself is awesome. He always had cold hands and his left leg was also stone cold – so cold that he would feel uncomfortable touching me as I would react or jump. His hands have warmth again and so does his leg!!
The next few weeks will be spent at home away from crowds and anyone that has been in contact with illness or could be sick themselves. We are imposing strict rules at home – no shoes, hand washing and sanitising continually – general common sense with hygiene and food prep and the dog lives outdoors.
I would like to take this opportunity to thank everyone for their continued support – the road ahead is a long one and it won’t be easy but we truly believe it will be worth it!
We are off to the Haemotologist tomorrow for a check up here in Sydney – will get blood works and a treatment plan for the coming months.
I will continue to post updates (maybe not as often as while we were away!) and I will share some more photo’s from our time in Russia as soon as I can sort thru the 2200+ pics I took!!
We are HOME!!
Saturday 25/10/2014 – (Day0 +16) Day 4 at home: still exhausted, fatigued, generally tired as well as still jet lagged and that is both of us!
Aaron has spent the last few days resting and recouping. Dr F suggested it would take about a week to recover from our almost 24hrs traveling home for a healthy person so Aaron needs to be easy on himself.
We had our first short trip out on Friday morning for a Haemotologist appointment. Dr B had full blood works done on Aaron and was overall happy with the results. He will have blood tests weekly and unless needed we will see Dr B once a month from herein. He has prescribed anti-viral meds and antibiotics – more tablets, Aaron isn’t impressed that hasn’t changed but knows it’s a necessity.
As for how Aaron is feeling ‘after’ HSCT & in respect to his MS symptoms we can’t and shouldn’t judge anything just yet – we are after all on the HSCT roller coaster. Dr F did say symptoms may enhance, appearing and disappearing over the coming months. The warmth is still in his hands but comes and goes in his left leg. He isn’t walking very well at all, but we expected that. And his ‘brain fog’ (a common MS symptom) is more prominent, maybe from the chemo and the treatment overall. Again, too early to judge – it is a long road to recovery, it’s been called a marathon not a sprint and we need to take it as such.
It’s amazing to think that this time last week Aaron was sitting in Pirogov Hospital across the other side of the world. This afternoon we were able to sit outside on the undercover deck at home for a short time and enjoyed the fresh air and the pleasant breeze! (in the shade – no sun for Aaron for a while!). The very short walk and time outdoors exhausted Aaron but he’s glad he made the effort (as was Shelby dog who wouldn’t leave his side!).
Saturday 01/11/2014 – (Day0 +23) Day 11 at home:
We always knew Aaron’s road to recovery would be a long one. For the next 4-6 weeks he will still be recovering from Stem Cell Harvesting, collection and re-infusion then Chemo & isolation – all big procedures and all in a 28 day time period. Dr F advised it would be 1-2 months ie 4-8 weeks before he would suggest Aaron start any regular physical exertion. I am continually reminding Aaron that it is a Marathon not a sprint – slow and steady wins this race – recovery first then rebuild! It is still very early days!!
We went into HSCT with the hope of halting the disease progression & anything else achieved would be a bonus. The EDSS score Dr F rated Aaron at was a little higher than we expected but also reality in a nutshell: we were catching this disease just in time – just a little higher on the EDSS scale and Aaron would not have been accepted for the treatment – and he had been progressing faster in the 6 months prior to treatment. We also knew that the immediate effects of having the treatment might be an increase in symptoms – Aaron has experienced that, his mobility is limited and he is still fatigued and feeling the effects of a month of inactivity. He has swollen feet and legs and the heat is still exhausting him. He has had bone pain (an expected side effect) and isn’t sleeping well. The positive still remains that his hands are still warm and he is having less stabbing pains in his head and less headaches. His blood results are good for a few weeks post-transplant and his Haematologist here as well as Dr F are happy with the results. He will continue to be monitored weekly for the 1st 6 weeks then monthly.
When he isn’t completely exhausted Aaron is easily bored! He has tinkered inside with tools to try and keep busy as well as involved and show he is still able to fix things. He has been outside on a few occasions to check out what’s happening out the front – all with good protection and keeping in mind the amazing opportunity this has given him! Relax recoup, rebuild 🙂
Saturday 08/11/2014 – (Day 0 +30) 2.5weeks home.
Tomorrow is 1 month post-transplant for Aaron. Hard to believe a month ago we were just half way through our Moscow part of this journey and Aaron was being accepted into the Pirogov ‘New Life’ club 🙂
This last week has been fairly restful for Aaron, not sleep rest just ‘doing nothing’ type rest. Doing nothing = playing PS3, surfing the net, talking on the phone, watching TV/Movies/Series and keeping to himself so he is away from any potential colds or flu’s or anything else nasty that he cannot afford to be near right now…. and he is generally bored! Other than our weekly trip to have blood checked we also had a visit to the Cardiologist this week who has ordered an Echocardiogram (or a heart ultrasound) just to be sure there are no problems. We will monitor Aaron and any report symptoms.
We are definitely on the HSCT roller coaster and things have gotten worse so we are looking forward to the rise again. I am posting the HSCT Roller coaster picture again, it was drawn by HSCT Warrior Phoebe who went to Moscow from the UK in 2012 – she drew the diagram to help others describe the long HSCT road to recovery to family & friends. Each HSCT recipient had their own MS to start with, and no two people’s MS is the same, it can be similar but never the same. Therefore the HSCT experience is different for everyone and so is the recovery time and process.
The only MS symptom that we can see that has completely gone is the cold hands – which is a nice thing but they still have pins and needles as well as no sensation. His left leg has lost sensation and all feeling completely and is not responding to his ‘thoughts or intentions’ ie he is telling it to lift and it’s not – so he is using the chair almost all the time as he was falling too often. We are anxiously awaiting the supply of his own chair from Enable. While we wait (we do a lot of waiting lately!) we are so very grateful to still have a loan chair from a good friend – it has allowed Aaron the freedom to get around inside without the fear of falling. As well as meant he can go outside in the yard and check out things once a day. We were not looking for miracles with HSCT and we won’t see real signs that we have halted the progression for at least 6-12 months when Aaron has his next MRI. Any improvements may not be seen, if at all, for 12-18mths – a long waiting game that requires a lot of patience.
Aaron is still very weak and is feeling the need to get back into some physical exercise to rebuild the muscles that are wasting from not being used the month in hospital and now 2.5 weeks home. Dr F recommended 1-2 months after returning home that Aaron could start so we are watching the calendar patiently knowing he needs to wait another 2-4 weeks and then a light rehab program can be set.
‘Slowly slowly catchy monkey’ right!
Saturday 15/11/2014 – (Day 0 +37) 25 days home
It was another 7 days of much the same in the AAMS house this week. Bactrim daily, Antivirals each Monday & Thursday, weekly blood tests on Tuesday’s and fill the rest of the time the best we can while still staying home.
It is becoming more and more challenging to occupy Aaron, he isn’t very mobile and is in the chair daily making it that bit harder again. So I put on my thinking cap earlier this week and came up with some super cheap indoor entertainment ideas smile emoticon The 4 in 1 Games Table has to be the best $12 I’ve ever spent at Kmart! Entertainment for both my boys and got them doing something together that wasn’t electronic! Aaron has saved the model building for next week lol Our ever faithful Shelby is never far from Aaron’s side when he goes out the back for fresh air and time on the deck and her antics can be entertaining and make for either rousing on her or laughing at her. While we are sitting around outside conversations often lead to the lists of things that are waiting to be done around the house once Aaron is able, the list never stops growing.
As I said last week we are on the HSCT roller coaster. Aaron is still weak from the treatment but happy he had it! HSCT was hard on his body (particularly his heart) and as expected he has had an increase in his symptoms now that the large dose of steroids he had prior to leaving Moscow have worn off. The next few weeks we hope he will start to feel a little better in himself and can start physio to rebuild his muscles and strength and will hopefully get a little more control back. He has started some light exercises at home and aims to get on his recumbent exercise bike this coming week.
If I ask myself ‘did it work’? I know we won’t actually know that for at the very least 6-12mths when he gets another MRI – but I believe it has worked. All Aaron’s pathology results show (in layman terms) that the chemo did its job and ablated the T cells. T lymphocytes play a central role in the pathogenesis of multiple sclerosis hence we believe HSCT has stopped the MS in its tracks and is allowing Aaron’s body to re-build MS free after his stem cell transplant. Unfortunately there will be damage that will remain on his brain and spine from his lesions – HSCT doesn’t repair damage. On a positive note his hands are ‘mostly’ still warm and his hair is starting to grow back on his head wink emoticon He has a lot of hard work ahead to get himself back physically and he knew that going into this. All the symptoms he is currently experiencing are normal and he just needs to recover at his own pace.
Slow & steady wins the race.
Saturday 22/11/2014 – (Day 0 +44) 1 month home!
Time fly’s when you are doing nothing LOL We’ve been mostly home bodies this 1st month home, and for good reason – Aaron has an ablated immune system. This means he is more prone to certain infections that could be life threatening should he contract them. In our opinion it is better to be safer than sorry! After all we didn’t go to this extreme effort to get Aaron to Russia for HSCT to disrupt his recovery. So far our social interactions have included Dr’s & Blood visits (LOL) as well as going outside when family or friends visit & a trip over to the next door neighbours front yard to have a chat.
Friday we got out to our check-up visit with Aaron’s Haematologist. Dr B is very happy with Aaron’s pathology results. We are watching 3 things; it is all about the White Cells or breaking it down in more depth the Neutrophils and Lymphocytes (particularly CD4+). As of last Tuesday’s tests Aaron’s White Cells are within the ref range, Neutrophils are in the ref rage but his Lymphocytes (particularly his T-cell CD4+ count) is still below the ref range. This shows that the HSCT did its job and in the words of our Haemotologist – “ablated the cells responsible for the MS”! I almost fell out of my chair when he said that – he believes it worked! I was kinda shocked that an Australian Dr admitted to us in consultation that the cells targeted by the HSCT were believed to be causing the MS and hence HSCT has stopped it! We HALTED MS!!!! We do expect fluctuations in Aaron’s blood results over at least the next 12-18mths as his immune system rebuilds and his body battles to recover from the Chemo but at the moment almost 2mths post-transplant things are looking on track and we are over the moon. We are now back to monthly blood checks and will stay on Bactrim until we see Dr B again at the 6 month mark unless needed smile emoticon
So what now? We need to keep reminding ourselves that this is a Marathon and we are only 44 days post-transplant and that is still early days. Aaron plans to get out to his shed as soon as he feels up to it (hahaha) he is hankering to tinker!! But in general we will still be in recovery mode and keeping to ourselves until Aaron feels much stronger. He is still very tired and weak from the whole process and will be slowly working towards a rehab program and re-introducing himself back into life over the coming months (wearing masks).
Physically Aaron is trying his best to walk around inside the house when he feels up to it but is still falling as his balance isn’t great and he needs to re-build muscle strength. His left leg is still letting him down – but it is rising from the floor just a little rather than always being dragged when he does try walking. The cold feeling in his hands and arms has almost gone, they are occasionally cooler than the normal temp but not icy cold like they were before smile emoticon His left leg temperature is the same, not always warm but much better. His fingertips still tingle but the sensation isn’t as strong and dulls after he puts pressure on a spot. The heat of yesterday didn’t seem to deplete his energy as much as it would have prior to HSCT but tomorrow will be another test (or not as we are planning on staying inside in the aircon)! And then there are the small things that I notice like his fine hand movements, he used to always take tablets from his palm but on a few occasions has taken them from me with his fingertips, small things that others might never notice but make me smile inside!
Thanks to everyone for all your support and encouragement. It’s a long road ahead and we still expect good days and bad for a while – no pain no gain right!