Category Archives: My Stem Cell Transplant Journey

VINDICATION…..

17 May 2018

“MRI brain scan taken on the 11th May 2018.

This was compared to a previous MRI from May 2017.

I am pleased to note that there were no new white matter lesions identified….

There was also no reported abnormal enhancement…..”

Yours sincerely,

…….

Consultant Neurologist


 

 

 

 

 

CONCLUSION – THREE YEARS IN REMISSION

 

Happy Place Discoveries Photo

Isaiah 43:19

19 “Behold, I will do something new,
Now it will spring forth;
Will you not be aware of it?
I will even make a roadway in the wilderness,
Rivers in the desert.

 

2017-2018: This period  was wonderful yet not without its challenges…..

Involving the recent HOT summer we experienced, infections & sicknesses etc.

As well as being confronted with other opinions, living with Neurological damage YET I KNEW & HAD FAITH that after 24 years despite these things the MS had been stopped.….

NO MORE: UNCERTINTY, MEDICATIONS, DISAPPOINTMENTS, FEAR OF THE FUTURE

 

 


 

 

 

 

 

appreciation

əpriːʃɪˈeɪʃ(ə)n,əpriːsɪˈeɪʃ(ə)n/

noun

  1. 1.

    recognition and enjoyment of the good qualities of someone or something.

    “I smiled in appreciation”

    synonyms:

    valuing, respect, prizing, cherishing, treasuring, admiration, regard, esteem, high opinion

    “appreciation of literature comes only from first-hand study of the works of great writers”


 

 

 

I have experienced so many wonderful things that Im so grateful for, here are just a few;

Driving again or should I say learnt to drive a hand controlled car!

Best illustration Ive heard is imagine driving with just your left foot…..

nb. NO ONE OR THING WAS INJURED during this process or has since.

This has enabled me to once again have my independence back (ha as long as its not raining – who enjoys sitting on a wet seat all day!).

Being a 7 seater I can; bundle my nieces in the back to venture out for ‘aunty treats’.

As well as this I have been able to offer its use within my volunteering role with Red Cross supporting former refugees settle into a brand new life in Nelson, New Zealand.

Im looking forward to being able to use it in other areas Im involved with & any other opportunities that open up in the future…..


 

 

 

 

 

 

 

 

 

 

Provision

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I am  incredibly grateful for the continual help with meeting my needs as well as the odd gratefully unexpected surprises.

Regular travel to Wellington for meetings to take part on a national Board I am on, a major plus of this is seeing & spending time with my wonderful family there.

Big needs being met by local & national; trusts & foundations.


 

 

 

 

 

THE UNKNOWN

 

I never imagined I would be here in these circumstances…

I thought, as I laid there once again surprisingly experiencing the most incredible peace & overwhelming sense of thankfulness.

I was so overtaken by these feelings that I quickly realised that it was loud, I mean really loud!!! This was familiar but ohhh so different…

8days later results received- NO NEW LESIONS!!!

2 Years in Remission & many more to come

 

 

 

 

‘Stemmies’ are stemcells

2 days ago( the 14th May)  it was my stemmies 2nd Birthday or you could say 2 year anniversary.

It has all worked, why am I surprised?

 

 

 

 

 

These last 2 years

Have involved recovery from the most medically challenging procedure I have ever been through let alone imagined!

I’ve also experienced some of the most stressful & difficult situations I’ve ever been through, including having to find a new home after 13 years in what I thought was the best house ever. This involved searching for 5 months to find a new one which I NOW LOVE

 

 

 

 

Watch this space

Hey In the midst of all this I just had 2 years without experiencing ANY RELAPSES OR DETERIORATION!

Today I had my annual appointment with my amazing Neurologist, We finished a VERY positive appointment of discussing all the close calls Ive had with death due to all the DMD’s Ive been on  with the clinical Tests – which resulted in the best scores ever!!!

 

Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us

Ephesians 3:20

A New Year – New Beginnings!

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14th Feb will be my 9 month anniversary since I got my stem cells…

Where did that time go?

So grateful for having the transplant last year, most brutal thing Ive ever done BUT definitely the best thing Ive ever done!!!

Timing was sooo perfect, it would cost us double if I had gone this year!

 

Well I am now officially in REMISSION, loving life & looking ahead…

Getting wonderful feedback from my incredible medical professionals here & in Singapore!

Never been so busy which I love.

New exciting Projects ahead, WATCH THIS SPACE!

Enjoying the fruits & doing things I couldn’t before.

Rediscovering what I love; cooking, gardening & spending time with wonderful people.

NOTHING IS GOING TO STOP ME!

Isaiah 55:8-9

 My intentions are not always yours,
        and I do not go about things as you do.
    My thoughts and My ways are above and beyond you,
        just as heaven is far from your reach here on earth.

 

INTERNATIONAL HEADLINES

Recently you may of seen a clip on the news about the stem cell transplant being done in the UK with much success … This is exactly the same as what I had done as well as thousands all around the world for the last 2o years – great that its finally being taken seriously!

Am excited that it is becoming a REAL option for others with relapsing remitting MS.  PHARMAC the drug days are nearly over!!!

25th August: Home Sweet Home!

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After 17 years of being diagnosed with MS (multiple sclerosis), and receiving many types of medications, finally the MS HAS BEEN STOPPED FROM PROGRESSING ANY FURTHER!!! We’ve seen complete reversal of some symptoms, significant decrease in others and even the disappearance of some old lesions (scars) on my brain – yay!

As I have had to battle this disease for soooo long there is continued damage that I live with. My body is only at the recovery process from the transplant meaning that I’m learning to adjust to life living in a wheelchair (for now at least).

I’m really appreciative of all the others who are also post having the transplant, and are helping me with the recovery journey which will be for the next 9-15 months.

A huge thank you to all the doctors and nurses at both Singapore General Hospital and Nelson Hospital for looking after me during this huge event in my life. I am so grateful for the care I have received in order for brighter things ahead. A big thank you also to friends and family (especially my amazing sister Phoebe) here and all over for your love and support – it means the world to me!

As I walk this recovery process I continue to trust the Lord & hold onto His promises knowing that He is the faithful Healer. Let the next chapter begin!

4th June: THE FINAL DISCHARGE

The Final Day!!!

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What a relief to have the jail band off or as they call it ‘my rolex’ – yeah right!

 

 

 

The room – my life in 28 days…

High Temperatures

Convulsing

Infusions

Mild phenomena

Stemmies Transplanted!!!

Hospital HIGHLY overcooked food

Really ugly pyjamas – peach is defintley NOT my colour;)

Visitors

Amazing doctors & nurses

Lots of new friends made

 

 

 

BUT I DID IT!!!

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One of my amazing nurse friend Penny & I huddled up under the freezing aircon in our apartment. (I still have to be in an 18deg temp, seems sooo wrong!).

It was sad to say ‘see you again soon’ to such an incredible inspiration throughout this journey in Singapore.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

28th May: 21 days…

TWENTY ONE DAYS IN ISOLATION COMPLETE!!!

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Wow can’t believe it I have manages to do 21 days in isolation!

 

Most of it incredibly sick on high dose Chemo – SLEEPING, vomiting & more sleeping.

 

 

 

 

Special Family Times

 

During the last 2 weeks I have had my Dad here to visit.

 

While he was here I didn’t see much of my sister – now I know why! Thank you Febs you are amazing!

 

21 May: How its going

A note from my amazing sister

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The last 36 hours have been a reminder of how rough this treatment is. It was expected this would be the hard part for Becks, but it’s still a fight to stay calm when it becomes a reality. The staff and nurses at the hospital however are pretty amazing, and we are confident with Becks in their care.

To recap and expand on where we are in the treatment: Becks is currently in isolation for the second part of the process (the actual transplant), followed by a recovery period. With transplant day labelled as ‘Day 0’, here’s the outline of this stay:

Day -6: Admission, line inserted ready for chemotherapy
Day -5: to Day -2: Four days of chemo to wipe out the immune system
Day -1: Rest Day
Day 0: Transplant day to insert new stem cells (and Dad arrived, woo!)
Day 0-10/12: High risk period due to having a low blood count and no immune system, all precautions taken to avoid risk of infection. Expected that side effects hit from day 3 or 4. Body expected to strengthen from second week
Day 7-14: One in ten chance of an MS flare up for a week
Day 14-21: Discharge expected within this time depending on recovery

We have just started Day 7.
Becks has had the expected side effects – intermittent fever, nausea, vomiting, diarrhea, and mouth sores. This has meant a lot of lying with a few ice packs on her body and a paper bag always by her side. She has been given lots of medication to help subside the effects, and sedatives also. For a couple of days she couldn’t hold any food or liquid down, so would suck ice cubes when she could. She has started back on soft, bland foods since though.

The unexpected bumps – two nights ago she was running a fever and as part of this experienced convulsions. Then yesterday she was given a platelet transfusion (because her bloods were too low), but unfortunately had a reaction and experienced shortness of breath. From what we understand Becks had also contracted an infection of some sort (we’re still waiting for clarification around this), but they caught it early and put her on antibiotics and oxygen straight away. As I mentioned before, she’s being well looked after and closely monitored.

So, all in all, a predicted storm. However, we know that we’re supported by so many family and friends back home and around the world, as well as friends and the church we are connected to here in Singapore. Most of all we know we are in the hands of an almighty God, and he will not fail us.

Thank you for your continued love and support, it means so much to us!

14th May: TRANSPLANT DAY!!!

The Awaited Day

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The special vessel vessel that contained my stemmies.

 

 

 

 

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Me sedated on a very emotional day.

 

 

 

 

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ITS MY NEW BIRTHDAY!

A gorgeous cake from ‘Awfully Chocolate’, even though I didn’t get to partake it was great seeing my dad, sister, friends & staff gratefully enjoying it.

 

 

 

 

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My honorary guests; dad, sister Febs, Gracie & Kelly in party mode,