Category Archives: My Stem Cell Transplant Journey

The Twelfth Hour

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3 Days to go…

After really struggling/deteriorating physically  in the last 3 months, once again I am being saved by medical intervention at the twelfth hour.

In seven days time I would have been admitted & preparing for the first dose of Chemo!

Finally the bags have begun to be packed – all two-three months worth.

Bedroom & house nearly all packed up to prepare for removal of carpet so wooden floors can be sanded & polished while I’m away – when it rains it pours!!!

Exemption on yearly income tax been given – PHEW!

Finally after three years of perseverance THIS IS IT!!!

 

 

What lays before me …

HUGE Journey ahead but I know I can do this

Part 1. Harvest of stem cells (stemmies), hoping for 3plus million

Part 2.  21 day isolation for the Transplant, know it will be tough, but hey Im getting a brand new immune system!!!

Part 3. First month at home in isolation – welcome to the land of masks, clean hands & living on a VERY strict diet

Part 4. REHAB over the Next 6-12 months

Know it will be a really tough BUT know with the help & support of family, friends and the strength from the Lord (the lover of my soul) I can do it!!!

 

 

When everything is breaking
You are left unshaken
When everything is tumbling down
You are the solid ground
Oh God you are,
All that you say you are
You never change, you never failed, you’ll never fail
Oh God you are
Faithful in all your ways
Forever You stand, forever You reign, forever remain
We shall not be shaken

 

 

 

 

 

16 DAYS & COUNTING DOWN…

Time to pack the bags!

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9.39pm Thursday the 19th of March-

Q: Would you be available to be admitted on Friday the 10th of April?

A: ABSOLUTELY!!!

Conversations immediately had, flights booked 24 hours later and I’m flying to Wellington on Monday the 6th of April to spend some time with my wonderful whanau before my sis & I  fly to Singapore the following day!

9-12 weeks in Singapore here I come!!! 2 nights in a hotel & then off to the hospital I go, can’t wait!

Such a surreal feeling/relief, am pretty much organised, works finished for the year so yay I get to spend the next 2 weeks relaxing – best way to prepare to go!!!

THANK YOU LORD!!!

5 days – 118.5 hours – 18,530km’s later…..

And so it begins…

-Gandof

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Tuesday the 24th of February – WE ARRIVE!!!

We Arrive at hotel, find our bearings involving a massive journey from China town into singapore city – my amazing sis soon discovered that China town is not made for wheelchairs:(

Introduction to the most incredible Singaporean dumplings!  In fact in turns out where we went has one michelin star!

Re introduction to pure WATERMELON juice, childhood memories in singapore come flooding back!!!

32-34 degrees everyday, 100% humidity, 25 degrees overnight

– THANK GOODNESS FOR AIRCON AND WATER, WATER, WATER!!!

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Wednesday the 25th of February

10am appointment with the wonderful Nuerologist  Professor Pavani.

She confirms that she thinks I’m a perfect candidate for a transplant! (dependant on approval from the Haematologist the next day).

Tour of the food court in the hospital – THIS TRIP HAD ALOT TO DO WITH FOOD!!!

Afternoon spent touring around ‘the gardens by the bay’, in 34deg heat but WOW!

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Thursday the 26th February

WOHOO THIS COULD BE THE DAY IVE BEEN WAITING 3YEARS FOR!!!

10.30 appointment with the Hemotologist Dr Colin.

To put it bluntly IM IN!!!!!!!!!!!!

SHOCKED

NUMB

TEARS SHED

SOMEONE PINCH ME

HOW DO I CELEBRATE THIS?!?!?!?!

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We then spent the afternoon out having lunch with one of the amazing local pastors (Gracie will be a wonderful person to know throughout my time in singapore)

Then back to the hotel we go – MORE FOOD, pack & have an early night!

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Friday the 27th February

4.30 am wake up

6am taxi ride

AND OFF WE GO AGAIN

See again soon Singapore!

Saturday the 27th of February

2am settle into Auckland hotel for a few hours

10am shuttle to the airport

12noon flight home to Nelson

“There is no place like home.”
― L. Frank BaumThe Wonderful Wizard of Oz

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Sunday the 16th of March – And…

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Eek was that 2 weeks ago!?!?!?

Since then I’ve been home,  spending most of it in bed on antibiotics & oral steroids as I fought 2 infections, bit of a flare up – BASICALLY UTTER EXHUSTION!!!

In usual Beck’s style during this time out (that I’ve told myself is training for recovery) I’ve been busy organising the details from this end; had a new housemate move in, handed my job over to a friend who will do it for the rest of the year, worked out all that I need to take and been organising to have my hair shaved off before I go!

MOST IMPORTANTLY I SLEPT!!!

Yes I have decided to have my hair shaved off.  After talking to many people that I know who have had the transplant.  This is for a couple of reasons; to reduce the anxiety that comes with it falling out (which it will be soon after treatment starts) and so I can start this big journey with my friends here in Nelson.

In fact I can’t wait to get this mop taken off, get this process underway and begin to dream about what life will be like afterwards (ha including my new hair)!

14th Feb: SUDDENLY!

“Everything can change in any moment, suddenly and forever”

Paul Auster

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And as the doors close to Australia SUDDENLY the doors opened to Singapore General Hospital.  Not something I had every considered before, in fact they have only just started receiving
western patients – I would be the second one.

So within 48hours of enquiring and my medical records being sent, Im off to be assessed.

Then within the last few days I have been given dates, appointment times and my flights
are  being booked.

Next Monday, the 23rd my amazing sister & I will be flying to Singapore for me to meet the
Neurologist and haematologist on the 25th and 26th.  I then fly home on the 28th.

Soooo much to do in such little time – breathe Becks breathe…

Singapore – where my life COULD be changed forever

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As I visit this beautiful Island, I will find out if they will accept me to under go a Stem cell
Transplant.

As many doors have closed over the last three years I have recently been left wondering Why?, Im tired and can I keep doing this…

Then I discover that Professor Slavin from Tel Aviv (door opened & closed) who I knew had trained Prof Richard Burt from Chicago (door opened & closed) has trained Dr Ho
from Singapore – who would of imagined that I would get the opportunity to be considered to be treated by the knowledge of the worlds best!

Isaiah 55:8-9New King James Version (NKJV)

“For My thoughts are not your thoughts,
Nor are your ways My ways,” says the Lord.
“For as the heavens are higher than the earth,
So are My ways higher than your ways,
And My thoughts than your thoughts.

22nd Jan: CRASH!!!

 A picture paints a thousand words

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Just like that!

My Car is written off

NO ONE hurt

Audi damaged (not mine)

POLICE

Lunch time entertainment on Trafalgar Street

My fault

Thank goodness for full insurance

 

 

 

A serious LOVE – HATE relationship

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As I began this year, loving this amazing weather we are having, summer events and having family & friends stay I am yet reminded that I live with this dreadful disease.

The heat as well as the stress from lots of recent events, even though I have chosen not to worry have all contributed to another flare up of the MS.

This has meant that over the last week I have experienced a major loss in strength, a significant increase in fatigue, numbness on my left side, sharp stabbing neurological pains in my head, double & blurry vision. Not something that I was wanting at all – especially as it isn’t needed, I’ve already been accepted on to the trial!

Once again today I started on another course of prescribed steroids. As much as I LOATHE taking these & the side effects that occur I am REALLY grateful that they pick me up & stop the downward spiral the MS takes. I have also chosen to see this as training for what lays before me.

 

 

 

I get knocked down, but I get up again.  You’re never going to keep me down.

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Despite the lets say the interesting start to the year I have had a wonderful 6+ week break, I look forward with anticipation to what this year brings (including a new car), an upcoming trip to Wellington for work, the much awaited news regarding Sydney and lots more.

In the meantime I “look to the hills from where does my help come from” (psalm 127 v 1-2), while resting in the peace that comes with knowing that I certainly am ‘Under His wing’.

“I can do all things through Christ who strengthens me” Phillipians 4 v 13

As the Irish rally cry says ‘”You’re never going to keep me down”!

1st Jan: A time of reflection and a time to look ahead

“How sad and bad and mad it was – but then, how it was sweet”
― Robert Browning

Nootebook & pen

While waiting in expectation for all that 2015 holds, I have been making the most of reflecting on all that I’m thankful for in 2014. It’s incredible how you start with a couple of things and the rest just starts rolling forth!

While doing this I’ve realised despite all the challenges 2014 brought (lets be honest at many points it was crap!), there were many doors that were closed which I’m now grateful for. I feel incredibly blessed with the experiences I’ve had through both events and day-to-day life. Most of all I’m thankful for the incredible people in my life: family, friends, and all the new people I’ve had the privilege of getting to know this past year. My life is rich indeed!

I was also reminded of what an incredibly hard time Christmas time is for soooo many, especially as we celebrated the life of some friends’ amazing mum, who recently passed away of cancer. I was made even more aware of this with the recent crash of the Asia air QZ8501. We are so blessed (however that looks) and really should appreciate every moment of every day.

I challenge you to also grab a cuppa and reflect on what you’re thankful for in this past year, despite all the challenges and disappointments you may have experienced – YOU WILL BE SURPRISED!

“Nothing great is ever achieved without much enduring.”
― Catherine of Siena

Barren endurance

As 2014 wound down with no more news I decided to just enjoy Christmas and see what the new year brings.

During the crazy busy month of December, I once again had to go on another course of oral steroids to holt the MS worsening even further during this hot period (especially after the recent damage caused by the last relapse). Summer is the most challenging season for me physically, however I choose (even on the REALLY sucky hard days which there are a lot of) with the Lords strength, to endure.

We are now waiting on the Ministry of Health to receive the supporting information regarding my case – the incredible effects the trial is already having and how the stem cell transplant would benefit me. We are confident that once this happens it will only be a matter of weeks if not days before I go to Sydney and begin the next exciting yet challenging chapter before me.

2015 A NEW YEAR, A NEW PAGE, A NEW HOPE – Bring it on!!!

Rainbow

While I continue to struggle with the heat I am choosing to hold onto the hope that lies before me. Though Sydney will be tough I am REALLY grateful for the doors that have opened up so far, and am looking forward to the MS being stopped and any improvements I experience. I am so excited for the opportunities 2015 holds. Although it feels like a bit of a blank canvas, it is one I am dreaming about how to once again paint.

Psalm 121 v 1-2

I will lift up my eyes to the hills—
From whence comes my help?
My help comes from the Lord,
Who made heaven and earth.

13th Nov: And the doors start to open …

“Faith opens the door to Gods promise for you; and patience keeps it open until that promise is fulfilled”.

Hope

 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???

The Results!!!

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!!!

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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 …..

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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”.