HSCT is happening for real.
A few hours ago Charl and I booked our flights to Tel Aviv, Israel.
On Tuesday, the 12th of January 2016 we shall depart from Brisbane International to the CTCI medical research centre for me to undergo hematopoietic stem cell transplantation (HSCT) under the guidance of Professor Shimon Slavin.The aim is to halt MS in its devious and destructive tracks.
If you wake me up in the middle of the night and ask: “Amanda, what are the Lord’s promises for you”, without a flinch it will be:
“I can do all things through Christ Jesus, who strengthens me”.
“He shall never leave me, nor forsake me”.
“He has plans for me to prosper, a hope and a future”.
“I do not have to fight, for this battle is the Lord’s”.
When I share my testimony, I share about how I guard my heart and mind vigilantly and that I am the gatekeeper of what enters and what stays there.
I also share about how crucial it is to maintain a positive attitude so that we can indeed live our best lives now, despite our circumstances.
And I share that I am a walking miracle because despite challenges, I do have the peace and joy that surpasses all understanding. By Grace alone I managed to find joy in a seemingly impossible journey.
Despite the harsh realities of the medical reports, 99% of the times I feel happy and healthy and when I say, “I am doing well” I declare that God has got this and it is well with my soul.
But this does not mean that a multiple sclerosis journey is a picnic and in recent times
I found myself worshipping through tears and meditating more and more on
Proverbs 3: 5-6
“Trust in the Lord with all your heart
and lean not on your own understanding;
in all your ways submit to Him,
and He will make your paths straight”.
... “FOR THE ENEMY PROWLS AROUND LIKE A ROARING LION, LOOKING FOR SOMEONE TO DEVOUR”
Over the last few weeks I found my knees buckling. The load got heavy and I started to lose heart.
MS can attack in various ways; for some the incapacity may be purely physical, for others it can be cognitive and for some it can be a combination of.
Over time I have discovered that my incapacity is mostly cognitive and that there was a rapid decline over the last 12 months. My neurologist said that this happens to only about 2% of people living with MS.
The best way I can describe what MS is doing to my brain, is to say that MS is working very hard to put my brain in a wheelchair. I can run marathons, but, amongst many other things, my short term memory and visual memory have been greatly impacted. My brain forgets most of what it hears and sees.
After the damning neurological assessment of September 2015, my neurologist ordered another MRI of my brain and spine for the 1st of December 2015 and the findings were mixed.
The brain tumour (which may be a side-effect of the MS medication) was stable and there were still no lesions on my spine, BUT one of my old MS lesions increased significantly in size over the last 6 months and there was a prominent new lesion in a new area of my brain.
The report said that this was “consistent with MS disease progression”.
My neurologist was adamant that I should go back onto one of the disease modifying drugs, but considering the horrible side effects, I could not agree to it. Plus, at best the medication only slows down progression.
I had many discussions and many quiet moments with the Lord over the last 4 ½ years and in everything we decide to do and everything we decide not to do, it is important to seek Him first.
After watching the 60 Minutes coverage of an Australian woman who went to Russia to receive a hematopoietic stem cell transplant with excellent results, I decided to prayerfully investigate HSCT for myself.
Dr. Richard K. Burt performed the first hematopoietic stem cell transplant (HSCT) for a multiple sclerosis (MS) patient in the United States at Chicago’s Northwestern Memorial Hospital many years ago and published the results of the newest HSCT study at the beginning of 2015 in the Journal of the American Medical Association.
Their results show that HSCT could be the first MS therapy to stop MS in its devious tracks and to reverse disability.
For this trial, 151 patients underwent a stem cell transplant. First, their immune systems were tamped down using low-dose chemotherapy to stimulate stem cell growth. Then, doctors used HSCT therapy, involving chemotherapy to deplete the immune system and an infusion of the patients’ own stem cells, previously harvested from their blood, to reboot their immune systems.
The researchers found that - at two years post-transplant - half of the patients showed a marked improvement in disability and of the patients who were followed for four years, more than 80 percent remained relapse-free. Considering the chronic, progressive, incurable nature of MS, this is nothing short of a miracle!
My humble opinion is that for those who love the Lord, prayer is a win/win/win situation. When we pray for healing, only one of three things will happen:
- Our prayers can be answered immediately;
- God can take us through a situation;
- God can take us home, which in my opinion is the ultimate healing.
I know that the Lord is taking me through the situation. MS is just a valley and I am not putting up camp – I am merely passing through. He has a much greater plan and purpose for my life. There is too much that still needs to be done. HSCT is not the final chapter. It is the beginning of the next season.
Although there is much I do not understand, I know one thing for sure: He has paid the full price for my prosperity and healing on Calvary. It just needs to manifest and this will happen in His time and in His way. I am not called to understand; I am called to trust in Him with all my heart.
However my healing manifests, I have no doubt that He is in the miracle. Whether the world acknowledges this or not, the unshakable truth is that all good things which include knowledge and wisdom are from Him.
Although HSCT treatment had been available to cancer and some of the other auto-immune disease patients in Australia and around the world for many years, it is currently not available to MS patients.
During September and October 2015 I made contact with the treatment facilities in South Africa, America, Russia, Israel and Mexico and were eventually placed on waiting lists in Mexico and Russia.
On the 2nd of December I emailed the latest MRI results to all the overseas facilities to which I have applied for HSCT treatment, hoping and praying that a door will open sooner than the one in Russia where Doctor Fedorenko put me on a waiting list for June 2017.
I even contacted the St Vincent’s research facility in Sydney, Australia to find out if I could be considered for phase II of the Australian HSCT trial, but as the lesions were not “enhancing” my application was rejected on the 3rd of December.
I will not go into the technicality of enhancing versus non-enhancing lesions, suffice to say that this closed many treatment doors for me.
The treatment manager at St Vincent’s went as far as to say that because I also have a brain tumour, all centres may reject my application for treatment and he outlined the potential risks. When we concluded the conversation my heart broke and I cried for hours.
My family and I are well aware of the potential risks of this treatment, but once the decision to apply for this treatment had been made, there were so many hoops to jump through and so many obstacles to overcome.
Firstly, a treatment facility has to accept your application for treatment. The selection criteria are very strict and the waiting lists are long.
Secondly, one has to find a haematologist who would be willing to do post-transplant care once the patient returns to Australia. Amongst many other things, post-transplant care can involve follow-up chemo every second month, for a period of 12 months.
Thirdly there is a huge financial obstacle to overcome. Although over the term, HSCT is much more cost effective than using disease modifying drugs indefinitely; my private health will not cover the cost of this treatment.
I hit an emotional low.
I know my prayer the last few months had been that He should open the right doors and keep the wrong ones closed, but still I cried out: “Lord, what now? Whereto from here?
I want to be brave and strong and courageous, but I am so tired right now”.
I did not guard my heart and mind as well as I could have, should have.
Four days later (Lazarus springs to mind!) on Monday morning, the 7th of December Charl left for work. I heard him start the motorbike, but then it went quiet. He came back because he wanted to show me something.
In front of our driveway was the most beautiful, picture perfect rainbow.
I was so caught up in all the setbacks of the previous few days that I did not want to acknowledge this as a sign from the Lord that He will keep His promises.
I said something that I am not proud of, turned around and walked away.
Because I knew in my spirit that this was from God, reassuring me and comforting me,
I felt an enormous sting in my heart straight away. I knew what I just did was wrong and I felt terribly sad and disappointed in myself.
LOVE, MERCY, GRACE
A few hours later on the morning of the 7th, I received a phone call from my superannuation company.
They have received the MRI report dated the 1st of December 2015 and because I now meet the criteria, I may have a valid claim for my superannuation benefits. My case manager will put forward a recommendation to his supervisor to this effect and let me know shortly.
This was the comforting assurance I needed that I do not have to have it together all the time for Him to shower me with His love and mercy and grace. His mercy is deeper than the ocean. His love is wider than the universe and His grace is more than enough.
JESUS’ HANDS AND FEET
We are called to be Jesus’ hands and feet on earth; called to be, not forced to be. Although He asks us and encourages us to help one another, the choice is still ours.
As I mentioned before, HSCT treatment is extremely expensive and because it is not available in Australia – it is still in trial phase for MS and may be available in 2022 – most people cannot afford this life changing/saving treatment.
But early in October, family and friends in South Africa and around Australia (Mackay, Brisbane and Perth) rose to the occasion and offered to help raise funds to open this treatment door for me.
Big plans for various exciting fundraising efforts saw the light: a raffle for a week’s accommodation at the luxurious Shearwater Resort, a Zumbathon, a “Walk-the-Talk”
5 km fun run (across South Africa and Australia), a morning tea, a family fun day,
a food fair, an evening gala event, an auction and many more. Some of the above were finalised, some were in the planning phase, some we just talked about/dreamed about.
No words can describe how grateful Charl and I and the children are for the love and support, prayers, kindness and generosity of family and friends across South Africa and Australia.
I learnt many valuable lesions and have to confess that this was a very grounding and humbling experience. It is much easier to give than to receive...
I pray that your generosity return to you 100 fold.
THE MIRACLE IN THE DETAIL
I will do the enormous breakthrough an incredible injustice if I do not spend time on the sequence of events from the 7th of December 2015. The miracle is in the detail.
It started with the rainbow in front of our house on Monday, the 7th of December and as you may know, seven is a very significant number in the Bible.
It derives much of its meaning from being tied directly to God’s creation of all things. The number seven is the foundation of God’s word. Seven is the number of completeness and perfection (both physical and spiritual).
It is thus very fitting that the following were preceded by God’s rainbow.
I received the phone call from the superannuation company on Monday, the 7th of December.
Two days later, on Wednesday, the 9th of December I received an email from a haematologist in Townsville saying that he would be willing to help me with post-transplant care if I decide to proceed down the HSCT path.
To understand the significance of this breakthrough, it is important to mention that there are patients in Australia, who 3 months post transplant are still struggling to find a haematologist to assist with post-transplant care. I have one waiting for me on my return. This is a huge relief and an answer to many prayers.
On Thursday, the 10th of December, I received the email from Prof Slavin which still makes my head spin.
It said that I may be a suitable candidate for HSCT treatment at their facility in Tel Aviv, Israel and in that moment I was reminded that the Lord opens doors no one can close! He chose to open the Israel door for me.
The challenge was that we will have to complete all pre-testing and settle the account in full before we arrive in Tel Aviv to start treatment on the 17th of January 2016.
Professor Slavin emailed us a list of all the pre-testing requirements and because we already made plans to spend Christmas and New Year with our children in Brisbane, we only had until Monday, the 21st of December to get everything sorted.
To reserve the date, Professor Slavin also requested a deposit of US$10,000 (AU$14,500).
On Monday, the 14th of December I contacted the superannuation company and asked if they could send me an email confirming our telephone discussion of the 7th of December and on the strength of this email, Charl and I accessed our mortgage and paid the deposit.
GETTING THE PRE-TESTING DUCKS IN A ROW
Because the hospital neglected to cancel my December appointment with the neurologist when it was brought forward to October, I conveniently had an appointment to see Dr. Boggild on Tuesday the 15th of December 2015. What a miracle!
This was my day on Tuesday, the 15th of December:
Appointment with neurologist to discuss HSCT and to obtain medical reports
Appointment with dentist for a dental assessment and to obtain dental clearance and a referral for an x-ray of my mouth.
X-ray of mouth at QLD X-ray - done and dusted
Appointment with GP to assess pre-testing requirements Obtain referrals for blood tests, MRI of my spine, CT scan of my head, chest, abdomen, echo of my heart and a script for Zoladex implant.
ECG - done and dusted
Pathologist for blood works – 5 vials of blood – done and dusted
Zoladex implant - done and dusted
Received x-ray report of my mouth and dental clearance report
Book MRI of spine and CT scan of head, chest and abdomen and echo of the heart
Dr Peta phoned – the lung specialist will fit me in between the 4th and 8th of January 2016 for a full lung function test. (Update: this arrangement fell through and dr Peta found somebody at the Wesley in Brisbane to attend to this on the 24th of December 2015).
Wednesday, the 16th of December 2016
MRI of my spine – done and dusted CT scan of head, neck abdomen- done and dusted
RETURN FLIGHTS TO ISRAEL AND ACCOMMODATION
Thursday, the 17th of December 2015
I phoned the superannuation company to find out when my claim will be settled.
Client services confirmed that they have received my payment instructions on the
16th of December and that I should allow at least 5 working days for my request to be processed and another 48 hours for payment. This will take us to the 23rd of December 2015.
Friday 18 December 2015
I started to feel the pressure and phoned the superannuation company again to ensure that I have completed the form correctly and that they have everything they need to process the payment.
A different person at client services confirmed that my claim is in the queue to be processed on the 22nd of December 2015 and that I should allow at least 48 hours for the funds to hit our bank account. This brings us to the 24th of December, if everything goes according to plan and the Christmas holidays do not interfere too much.
Charl and I determined that we cannot wait until then to book our flights or to sort out
accommodation. My stomach went into a knot. This is too close for comfort.
With Russia the treatment is inpatient, but with Israel the treatment is outpatient.
Charl and I will have to stay in a hotel close to the treatment facility for a minimum
of 54 days and we cannot book accommodation before we buy our tickets.
Charl contacted the travel agent and again we had no option but to access our mortgage in faith. I said to Charl that I was going to faint and he said: “Not now”.
And then Charl saw it...
Regardless of what two different service team members saw on their computers on the
17th and the 18th of December respectively when I enquired about the settlement date, my superannuation benefits were paid into our bank account on Thursday, the 17th of December – supernatural provision!
Proverbs 3: 5-6
"Trust in the Lord with all your heart
and lean not on your own understanding;
in all your ways submit to him,
and he will make your paths straight".
Dear family and friends, many of you tossed and turned at night thinking of ways to help me and my family; many of you planned and organised and supported fundraising events; many of you made a donation or gave a love offering; many of you interceded, fasted and prayed; many left a note of encouragement in my post box or on face book or an email and many of you held my arms high when they got tired.
HSCT is an answer to your prayers as much as it is to mine. This is your miracle in the
making as much as it is mine and I pray that our Lord will use this journey to encourage us that no matter how bleak our situation appears to be, to stay focussed and to never give up or lose hope.
Dearest family and friends, Charl and I would not be able to do this journey without your
continuous prayers, love and support.
It is Christmas time and my prayer is that we will - in the spirit of giving - keep on reaching out to others and keep on being Jesus’ hands and feet to make the world a better place.
“Thank you” is a small word, but it is from an extremely grateful heart.
Until next time, be happy and healthy!
PS: If you would like to follow my HSCT journey, just like the face book page:
Amanda’s MS and HSCT journey