Category Archives: My Stem Cell Transplant Journey

26th October: Doors open – Doors Close

 ‘Faith opens the door to God’s promises for you; and patience keeps it open until that promise is fulfilled’

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Following my last post I have continued to struggle physically, however was able to organise & hold a successful work event called ‘Transition’ on the 14th Of October for students leaving College at the end of this year and preparing to enter into world what ever that involves.  The event included free budget advice, free legal advise,  how to make cheap & yummy meals & loads more- thanks to wonderful support of others & use of my wheelchair on the day!

Phew I did it!

In the midst of the last few weeks I had my application to tel aviv accepted, however a week later after discovering more information eg. The increased cost, being an outpatient for most of the time, having the potential date given to someone else (doors closing) I decided to pull out.

However later that day while meeting with my neurologist (with my dad ), she did her neurology  examination, which showed significant deterioration on my right side, she concluded that I HAD RECENTLY EXPERIENCED A RELAPSE!!!

So an URGENT MRI scan referal was sent to radiology. However due to the backlog they are experiencing the first appointment available wouldn’t be until the first week of December.

The MRI scan will be of my brain to confirm that I did have a relapse. If so, which we are expecting the results would show this & they would be sent to St Vincent’s Hospital in Sydney – Potentially back to the original & best option!

This week I will be investigating having a MRI scan done privately to speed the process up, especially as we are aware that things will be closing down for the Christmas/New year period.

I have been  reminded of this following saying:

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While I wait I have been reflecting on the following scripture: Psalm 62:5-8

‘My soul, wait silently for God alone,
For my expectation is from Him.
He only is my rock and my salvation;
He is my defense;
I shall not be moved.
In God is my salvation and my glory;
The rock of my strength,
And my refuge, is in God.
Trust in Him at all times, you people;
Pour out your heart before Him;
God is a refuge for us’

3rd Oct: There is HOPE!

‘Through it all, my eyes are on you – It is well with my soul’

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Sunday the 21st of September I went out with some wonderful girl friends for lunch, where to my absolute surprise the conversation lead to some amazing revelations (or you might say the light was switched on) regarding my dreams and how they can be so tangible in this next season in my life, my future (if I choose too).  I was soooooo wonderfully overwhelmed, so I drove to one of my favourite thinking spots to take some DEEP BREATHS, pray, write things down & try to figure out where to from here!!!

Little did I know what the next two weeks held for me; an incredibly hard time where my body was really weak, my strong right leg lost strength (where I had to ask for help to left my leg up stairs  esp. to get into my own front door). Mrs Independent’ had to humble herself and ask someone to get my groceries.  Struggling to move my feet when walking, numbness in my arms, hands & on my face and worse of all finding it harder to breathe.  I have heard it described as the ‘MS hug’; where your chest feels like its in your neck – its not a nice experience.

So off to Medlab I go to get my blood checked in case my body was fighting an infection, this would normally cause deterioration.  The next day to my delight I got the call there is nothing wrong, mmm whats going on??? A relapse or am I just getting worse?!?!?!  Long story short 2 doctors visits later, 2 courses of antibiotics & a course of oral steroids things have improved/are improving but still the question is ‘What is going on’? Thats been an heck of a crazy 15 days …

In the midst of it not knowing if it was a relapse or not (still dont know), my parents & I have decided that we need to pursue having the transplant privately esp. with experiencing the recent deterioration.  So the adventure continues with waiting to see if I can still get into the Sydney trial (cause who knows if that was a relapse?) but in the meantime making progress looking into another potentially viable option; Tel Aviv in Israel.

Throughout this time I have leaned on what I know will never move, be shaken or change – My Lord; the lover of my soul, the one whom Im under His wings. IT IS WELL WITH MY SOUL …

 

20th Sept: Feeling Frustrated!

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Psalm 121

1. 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.

He will not allow your foot to be moved; He who keeps you will not slumber. Behold, He who keeps Israel Shall neither slumber nor sleep.

The Lord is your keeper; The Lord is your shade at your right hand. The sun shall not strike you by day, Nor the moon by night.

The Lord shall preserve you from all evil;He shall preserve your soul.

The Lord shall preserve your going out and your coming in From this time forth, and even forevermore.

20th September

I write this sitting here looking out to the beautiful western ranges in faith knowing that despite how I feel the Lord is in charge.  This coming Tuesday it will be 6 weeks since I had any disease modifying drug in my body & oh boy am I feeling it!  I am really battling fatigue, muscle ache, incredible pain in my head and worsening of symptoms (I say sitting here with a completely numb left leg).

The change in season; the spring weather is definitely having a toll on me – but to this point without a relapse:(  I think the worse part of it is that I dont know how my body will be day to day or should I say hour to hour? Im particularly finding it frustrating when I see on the many face book pages I follow about others being accepted and undergoing the transplant

BUT I MUST REMIND MYSELF THAT THERE IS ALWAYS SOMEONE WAY WORSE OFF THEN ME! So in the meantime I carry on keeping busy as I can, looking to the hills while trusting in my Lord.

Isaiah 55

9. “As the heavens are higher than the earth,

so are my ways higher than your ways

and my thoughts than your thoughts.

Psalm 91

4. He shall cover you with His feathers,
And under His wings you shall take refuge;
His truth shall be your shield and buckler.
You shall not be afraid of the terror by night,
Nor of the arrow that flies by day,

29th Aug: Relapse or not?!?!!

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After having a REALLY tough couple of weeks physically involving feeling like I was having a relapse, lots of falls etc. but was told that its not just my body compensating for not having any meds in me = its confused!!!

 

I conclude with excitement/dread that Spring starts next week – A SEASON WHERE RELAPSES ARE AT THEIR HEIGHT AS IT GETS WARMER.

 

I am particularly encouraged by a dream I had last Saturday night (23rd August) which has stayed clearly at the forefront of my mind.  I dreamt that I was somewhere (home, hospital who knows) & I had just been informed that the scan had showed the results we needed & therefore was being sent to Sydney!

 

I was then told I had 2 weeks to get there for the transplant!  I then remember saying to myself ‘wow that was an easy relapse’.

 

On that sunday I went to a service at the Nelson Cathedral to hear a Zambian speaker from London – his message was powerful & really spoke to me …. but thats another story:)  After the time of worship a lady got up & said that she feels she needed to share what was engraved on a piece of furniture there; ‘Be Prepared’.

 

I felt this was sooooo for me!  I have been feeling a sense of  urgency to finish getting the information ready & start handing it over to a friend who’s going to cover my job for me.

 

A complete step of faith but something I know I need to do …..

22nd Aug: The waiting (part 2)

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Its been 12 days since I had any meds in my body today & man am I feeling it!

The last 5 days have been really rough involving 2 falls (luckily at home with no injuries) which I had to get people to help me back up, am experiencing major fatigue, a stabbing nuero pain in my head (my left side) & more. The weakenss is particularly of my upper limbs – am feeling really weak.

As usual I have been taking my temp regularly to make sure I dont have, I generally dont feel unwell (flu etc.) but need to be safe.

I realised on this past Tuesday that we are coming into spring, this is when relapses are very if not more common.  I used to dread Spring every year for this reason.  However as unpleasant as it is may it bring one on…

While I have canceled appointments to give myself more rest over the next few days I find myself really frustrated as I LOVE being busy & had/have an exciting few days ahead planned.

I find myself reflecting on my favourite scripture – Psalm 23

“The Lord is my shepherd;

I shall not want.

He makes me to lie down in green pastures;
He leads me beside the still waters.

He restores my soul;

He leads me in the paths of righteousness

For His name’s sake.

Yea, though I walk through the valley of the shadow of death,
I will fear no evil;
 For You are with me;
Your rod and Your staff, they comfort me.

You prepare a table before me in the presence of my enemies;

You anoint my head with oil;

My cup runs over.

Surely goodness and mercy shall follow me

All the days of my life;

And I will dwell in the house of the Lord Forever.”

I have recently been good at asking for help but know I need to now rest & see what happens (VERY hard for me).  As it says in verse 4 I will not (choose not to) fear  as I am assured that the Lord (the lover of my soul) is with me & is in charge!

22nd July: Not the results I wanted

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On Monday the 22nd of July I find out that the scan showed NO ACTIVE LESIONS! I can’t believe it as it’s like I could ‘taste’ having the transplant …

 

After seeing the scans (LOTS of scarring from previous relapses) it was explained to me that it was a rebound I had experienced as a result of coming off the tysabri for 2 months rather then a relapse- I couldn’t believe it!

 

To say I was gutted was an understatement!!!

 

Since then I’ve been on nothing drug wise (there’s nothing available for me) and again im WAITING FOR A RELAPSE!

Once again I hold on to Isaiah 41:10, this time in a different context, keep busy doing life as much as I can, trusting in The Lord and WAIT.

10th June: So it begins

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Baseline MRI scan post finishing tysabri happened on the 10th of June & to my amazement I slept through the whole thing (if you have had one before you would appreciate how abnormal this is – ITS INCREDIBLEY LOUD!). Anyway as I suspected despite the little glimor of hope I held onto there was NO current  MS activity = the tysabri was successfully working still:(

Two weeks later (23rd June) I had to go get my eyes tested at the hospital, a check up that was due. Leading up to the appointment I had been experiencing an increase in double & blurred vision & some pain behind my eyes – while having the tests they checked my optic nerve (it was fine) however to be safe they made an appointment to see me again the following Monday… Maybe something was starting to happen??? However Monday came & the pain had gone! Dissapointed & confused I cancelled the appt.

Another two weeks later the eye pain etc. had come back aswell as symptoms such as dropping things, really struggling walking (even with the walking frame), increased lack of balance & fatigue so I contacted my Nuerologist to let her know. If things got worse I needed to advise her.

2 days later things were worsening fast including little things like struggling to roll over in bed. It was getting scary as I didn’t know how I would be hour by hour,   I had decided to stop driving – so once again I contacted my Nuerologist and she wanted to go see my gp & have blood tests done to eliminate any chance of infection. When I do get one the ms flares up like a relapse. So I called my gp, I couldn’t get an Appointment until the following afternoon.

Thursday 10th July my amazing friend took me to my gp. I couldn’t even walk properly with crutches (politely refused to use the doctors wheel chair – says it all really I’m stubborn & fiercely independent  often to my own deferment). So my friend & the nurse helped me walk in … Said it all to my gp really. He did the usual tests including the reflexes in my legs (there was none). Yip I’m having a relapse BUT we need to check my bloods first so off to medlab we go. Getting blood tests are always a bit of a nightmare but I was really thankful that they got it on the first go & not only that they came out to the car to do it! I was sooo grateful as it would of been a drama to get me in there… Now All I had to do was wait to the morning for the results:)

WAITING – something I’m getting very used too, doesn’t make it easier though!

Friday 11th July I woke with a feeling off apprehension – what was the day going to hold? I was getting worse very quickly, what will the blood tests find/show? Would I be allowed to be admitted into hospital? I had to be honest with myself I wasn’t feeling safe at home & eek my flattie was about to start doing her 4 days of evening shifts tonight, the physically most hardest part of my day – don’t worry Becks that won’t help I was trying to tell myself.

I choose to find comfort in a scripture The Lord reminded me the previous week …
‘Fear not for I am with you, be not dismayed for I am your God. I will strengthen you, yes I will help you. I will uphold you with My righteous right hand’. Isaiah 41:10

 

I know that whatever happens The Lord, the lover of my soul is in charge!

 

10.30am I get the call my blood tests are clear! Am then instructed to go to a&e ASAP. So 12 noon with thanks to a friend & her daughter I arrive & thanks to the printed emails I was told to take was quickley ushered through to be  assesed. As exhusted as I was I was soooo excited to
At 4pm I was wheeled down to the medical unit with the biggest grin on my face! Hey this is hospital training for the transplant I’m now eligible for!!!

 

Monday morning comes, steroids are kicking in, hopefully I’ll be discharged today & yay this afty I have an MRI scan to prove the relapse:D

 

What a scan the usual 30mins scan turned into 80mins!!! As they also scanned my spine & neck. I’m used to being in there but started to panic – what if they don’t let me go home today?!?!?!

16th May: The Waiting

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During the next 10 weeks I waited …. But persevered by applying to Tel Aviv who said they would take me but soon after had a time of them not happening there so as I do I rang st Vincent’s to check on my application – I was at the bottom of the pile:( Australia had a ‘black’ budget so I pretty much wrote them off….
 
16th May BUT to everyone’s absolute surprise while having a mtg w my Neurologist (which my dad had flown down for) to talk about where to from here esp. considering there was only 1 treatment of ‘tysabri’ available, which I had a gut feeling not to have after the last one the previous Friday  … & there was only 1 other medication available that would cost us 31k a year as pharmac won’t fund me anymore as my disability scale is now to high (6.5).

The medication wouldn’t have much of an effect & would only be another addition to the cocktail of meds I had already had – I wasn’t keen but open to conversation …  Then we find out that 30mins before we had arrived my Nuerologist had received an email FROM ST VINCENTS INVITING ME TO APPLY FOR THE TRIAL!!!!!

Later I found out that this was depending on recent brain scans showing that I was still relapsing/remitting proven by active lesion being found (caused by a relapse).

18th Feb: St. Vincents Hospital

Darlinghurst St Vincents Hospital

On the 18th feb this year after hearing from a friend on a face book forum, st Vincent’s in Sydney are doing an Australian stem cell transplant trial!!!

I nervously picked up the  phone & rang St. Vincent’s – I felt like a naughty child (who knows why!) but incredibly excited … But to my surprise or should I say DELIGHT I had an incredibly informative discussion w someone who probably told me way more then she should have!

Coming off with adrenline pumping I looked through my hospital notes & Walah I found the letter I had been sent 6 months earlier from one of the country’s top Nuerologist informing me that I could not have a transplant done here in NZ (another becoming very common blow).

 

HOWEVER IF THERE WAS AN AUSTRALASIAN TRIAL HAPPENING he encouraged me to apply!!!

 

So I promptly wrote an email to my Nuerologist with the list of info needed from st Vincent’s oh & attached the scan of the letter (para graph 3 on page 2 to be presice). Again feeling very nervous (like that naughty child again) I pressed the SEND button … Delighted to receive a prompt reply saying ‘sure I can do that’.