Waiting in Anticipation....

Day 4

Well there's probably no need for a big build up since you already no the answer but I'll go there anyway.........  Just pretend you didn't read our little blog post and you can go through it with me again!

Todays the day we find out whether I am approved to move forward into the actual treatment phase.  As I've explained up until now it was just testing and there is no guarantee that you will be treated as they want to make sure that you are healthy and your body is up to the challenge and has the strength to undergo HSCT.  I don't know of anyone who has been turned away at this stage but I have heard of other illnesses found that have been causes of concern.  The testing is so rigorous and most have found things they never new they had.

Dr Fedorenko had told us yesterday that he would see us around 10 or 11am.  We knew he would get to us at the best possible opportunity, we also knew he had to have a chat with Matt as well as Aaron and he also had another two transplants to do upstairs today - busy man to say the least!  We waited with baited breath!!  I hardly ever get sick, occasional sniffle, sinus infection, not much as all, I'm always saying to my Neurologist when he asks how I am, healthy as a horse apart from the MS!

So we patiently wait our turn or should I say tried to wait patiently, I started to get a big anxious by about 1.30pm, I'd had an extra blood test that morning that Matt hadn't had so of course you start to think why - I know no rational to it but the mind starts wandering..  Aaron's had his chat, all good, so excited for them!.  Matt's had his chat, all good, so excited for them!  Waiting, waiting- mum & dad know we are waiting so they are messaging, Isabelle knows we are waiting so she keeps facetiming.  Seb is oblivious as he is with good friends having a ball which is great!  I think about 1pm Dr Fedorenko comes in and says I have to go upstairs to transplant and I will come down and see you in 30-40 minutes - I completely understand that the girls need to come first but tears well up in my eyes and he says are you okay, she's worried, Paul says, Dr F - nothing to worry about, it is all okay, results are all okay.  Big relief although we still need to have the chat to confirm but my hearts beating a little slower.

A distraction came through Facebook at the perfect time!  My new good friend Jane, who is on her way to Moscow next month, started live commentary for me on 'The Bachelor', with pictures and all!  (she'd also done it the night before and it was great, felt like I was watching, well not quite but a good second to not).  Yes I know it's rubbish but I just couldn't stop watching it at home and couldn't believe I was going to be away for the finale!  What - he's dumped Louise and it's down to Sam and Lisa, I had my money on Louise..  Oops have to tune out Jane, Dr Fedorenko is here for the chat which sorry but so trumps the Bachelor!!

Dr Fedorenko spends the next 40 minutes with us going through all my tests results, everything is really good as I said previously I'm healthy as a horse, apart from the MS.  He believes that I am transitioning from Relapsing Remitting Multiple Sclerosis (RRMS) to Secondary Progressive Multiple Sclerosis (SPMS), check out my MS page if you are interested in reading about the difference.  He also thinks I'm about a 5.5 on the Expanded Disability Status Scale (EDSS), title might speak for itself, easily Googled if you are interested in what this means also.  The whole HSCT process is discussed and the different protocols around the world and why he believes in the one they practice here.  I don't have any enhancing lesions and a lot of other facilities won't provide HSCT to those that don't but Dr Fedorenko believes that if you are still progressing that there must be some enhancement and we just can't see it through the MRI machine.  He is very confident that I will have success - 70-80% success although if we work together we will have 100% success.  He very much believes in a positive attitude and says the key is "Good Food, Good Mood and Rehabilitation" so that needs to be my motto for recovery! (he liked my top that I was wearing mum!)  Very very happy we are..  it's funny you kind of think once you are here it's the beginning but once you start testing you realise that you really need to pass them and be healthy enough to actually start HSCT..  So very relieved we are - thank you for your prayers and positivity that's been sent out way xx

Time for a trip up to level 3 as there is another celebration for two ladies, ended up just being for Cheryl and Irina was far to exhausted to come out and wanted to sleep.  Such a special day for them!


Emma, me and Sam (left to right)

Sam and I popped in to say Hi to Emma, she's really loosing some hair now which is great.  It's funny I didn't think I wanted Paul to visit me while in isolation but it seems to be really nice for Emma having visitors even if it is through the glass so I think I'll be asking him to pop in once a day.  And giving him my shopping list for his spare time!!

I wanted to catch up with Irene so rugged up and headed outside to find her, last outside trip for her and Louise before they get locked up tomorrow (sounds like we're in a special facility when I put it like that!).  Felt a bit weird going out but then I realised that I haven't been out all week.  I think with waiting for testing and results and chats I haven't really known when it was a good opportunity.  Best I get out and explore the gardens tomorrow as they are beautiful - amazing that we have this surrounding us whilst in hospital, I'm sure my photographer will assist in doing it justice!

Not a lot more to tell, I think I've had enough excitement for one day, it's all action stations from here in, not sure if I'll be able to keep this up but I'll give it a good day..

A couple of phone calls from Isabelle, think she might be missing me a little so organised to Facetime at 7.30am Brisbane time so alarm set for 1.30am Moscow time..  Better not take that sleeping pill tonight!!  And since I didn't get back to read Jane's commentary yet, Isabelle was happy to be able to let me know who won The Bachelor - back to Jane's commentary to find out that it looks like there's scandals already!!

Finished the day with another Episode of Sex and the City followed by Arrow, enjoying my tv time!!