“Faith opens the door to Gods promise for you; and patience keeps it open until that promise is fulfilled”.
WOW over the last 6 weeks soooo much has happened!
Monday the 6th October: I receive an email from Tel Aviv advising me that my application to have the stem cell transplant there has been ACCEPTED!
Over the next few weeks I learnt how much the accommodation would cost; Id be an outpatient 20k! That as well as instead of receiving chemo over a couple of weeks it would be in a few days – ouch!!! That the potential date they were going to give to me on the 21st of December was given to someone else – was this doors closing?!?!?!
Monday the 20th October – Appointment with my neurologist post being on oral steroids for what we thought was a relapse; after a physical neurological examination this was confirmed. YAY Its not all in my head, even I was surprised how much the tests showed that I had deteriorated, especially on my right side. An urgent MRI scan referral was being sent.
After waiting 6 months for a relapse it had finally happened!!!
Not only had I had a relapse but my EDSS (Disability scale) has been risen to 7:( No wonder Im finding my day to day life MUCH harder. Ha but if you know me that still doesn’t stop me, shall I just say slows me down.
On further discussion of what my options from here are 1) Go on either of 2 drugs which we would have to pay for & once again both had the risk of getting PML as guess what I am still JC Positive. 2) Pursue Sydney IF my scan showed new lesions.
YAY Im not going MAD & action is being taken …
PHEW upon discussion Tel Avi wasn’t meant to be as I was reminded about my risk of getting leukaemia (because of the prior chemo that I had received 7 years ago), therefore the tests that would of needed to of been done for them would expose me to so much radiation that there was a high chance that I would get Leukaemia:(
I went home and promptly withdrew my acceptance to Tel Aviv, dont get me wrong they are VERY good at what they do, they are the world leaders in this field.
The awaited MRI scan
A week after having seen the neurologist I rang radiology to check they had received the referral & ask when I had been booked for – FIRST WEEK IN DECEMBER!!!
So upon further investigation it was decided that we were going to book one privately the following Monday the 3rd of November through my GP.
HOWEVER on Friday the 31st of October while meeting with a girlfriend for a coffee at my second home (Zumo’s) at 12.15 I got a call from a private number, lucky that I answered it as the Radiology were asking me to come for the MRI scan at 1.20 that day – OF COURSE I CAN!!!
It was the most exciting scan Ive had (thank goodness just of the brain so only 45mins of lying still). I can’t even count how many Ive had but I couldn’t help think & pray will this be the one that gives us what we need???
On Wednesday the 5th I get a call (yes while at Zumo’s again) that YES not only did I have NEW LESIONS but there are FIVE of them!!! One on the right frontal lobe & 4 at the back – eek not good at all but Ive never been soooo pleased to hear that I have new scars on my brain!
On Monday the 10th of November the results were sent to St Vincents in Sydney!!!
And so I wait with much anticipation while preparing myself as much as I can for this next journey in my life.
While waiting I have and continue to be encouraged by following others who are currently receiving the transplant in both Russia, Chicago & Tel Aviv – looks/sounds scary but I know I CAN do this!!!
Today I also made contact with Sandi who received a transplant 14 years ago and is doing amazing!!! Sandi loves to play golf.
Upon my continued Research I have also discovered the in Norway that are now making the transplants the first line treatment for MS. If you speak/read Norwegian click HERE to read more info (or use google translator!).
Canada have also released their study results which are very encouraging. Click HERE to read more info.
The Dream …..
I can’t help but being reminded of the dream I had back in August regarding me having received the results of the scan that were then sent to Sydney & thinking “Wow that was an easy relapse”.
You need to understand that in the past when I have experienced a relapse Ive ended up in hospital with usually only 1 or two new lesions appearing
NOT ONLY DID I NOT END UP IN HOSPITAL BUT THERE ARE 5 NEW LESIONS!!!
I am excited for whats ahead of me, however trying my best to keep two feet on the ground!
The Scripture that has really spoke encouraged me while I meditate on it i Isaiah 43:19
“See I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the desert and streams in the wasteland”.