About – Numinous Expeditions
“We’ve had many numinous experiences, which left us with feelings of being overwhelmed and inspired by what has been, what is before us, and what is yet to come…”
Back in 2017 we were leading normal lifestyles, our goals and aspirations focused on growing our business, being financially successful, and settling down in our home town – Nelspruit.
Things started changing for us when I got sick, and eventually ended up in hospital without being the least bit prepared for what was about to follow for the next two years, and the remainder of our lives together.
Admitted for one month in a government hospital in Nelspruit, we tried to hold on to our livelihood. Jolandie ran the business, with me directing over the phone. We thought that we would be able to regain control of the situation. My blood levels were extremely low, my energy depleted, and after a series of bone marrow biopsies we soon found out that my bone marrow was failing.
The remainder of 2017 was filled with frequent blood transfusions and frustrating hospital experiences. Eventually we were referred to another medical institute in Pretoria, who treated me for a couple of months. We were sure that things would get better, but off course my condition worsened, and they had no choice but to refer us to the Groote Schuur Hospital in Cape Town for a peripheral stem cell transplant (formerly known as a bone marrow transplant).
At this stage I had been diagnosed with Aplastic Anemia (bone marrow failure without a cause) but the doctors wanted to do one last bone marrow biopsy, and run tests of their own. We were told before the final diagnosis that the only option was to undergo the treatment, and that we would have to spend 6 months in Cape Town. We were warned that the transplant poses many risks and was regarded as an extremely tough treatment. We did not let it get us down, and we were excited to get it over and done with. We would later discover that it would be much easier said than done.
Engaged at this stage, we asked the doctors if they would allow us enough time to go off and get married, and find some means of holding on to our carpentry business. They agreed, and sent us on our way. In the end we had to close our workshop down, but managed to convert our pickup into a home on wheels (Gertha). We had a beautiful wedding in May of 2018.
Two days after we were wed, the call came through that would change things yet again. “Robin, I’m terribly sorry for having to do this over the phone, but unfortunately, it’s blood cancer – Leukemia. You’ll have to get down here ASAP.”
We rushed to get ourselves ready by selling what we had left, and hitting the road to Cape Town. By this time our perspective had already shifted and we were determined to make a difference by assisting other NPO’s and causes with physical projects. This had to be put on hold as we had focused all of our attention in getting ready for the fight of our lives.
We got to Cape Town, and was disappointed to hear that the doctors wanted to run one last test that would hold up the procedure for another two weeks.
They called us in and confused the situation by diagnosing me with an additional condition. Fanconi Anemia. We had absolutely no idea what it meant, but soon found out that it is an incurable genetic DNA repair disease that causes all types of cancers, and if I were to survive the Leukemia as well as the transplant, our fight would continue for the remainder of our lives. The doc sat us down and gave it to us straight. “If you survive the treatment, you’d have a life expectancy of 35 years”. I would come to love this statement in time, as it was confirmation of a prayer that I had sent up earlier in the year asking for another 10 years on this beautiful planet (I was 25 at the time).
We booked in at the F4 transplant ward at Groote Schuur, and once the isolation room door was shut behind our backs, things started getting very interesting. The plan was that I would be out in a months’ time if the treatment was a success, but due to complications I would only see the outside of the room after almost 5 months. I only had ONE SINGLE MATCH in the whole world. My sister and life-saver, Vasti, was a 50% (haploidentical) match, which was not ideal, but was my only chance. Full body radiation, chemotherapy, and finally the day of the transplant came. I was extremely ill and weak, but we were still hopeful, our hope would be tested as soon as our arch nemeses made an appearance. His name, Graft VS Host disease (GVHD). The stem cells were attacking my body, and things started getting tougher than we could ever imagine.
Throughout the treatment we learnt many life lessons, changed our way of thinking, and appreciated all of the moments that we were given.
We vowed that we would attempt to make a difference in the world around us, giving instead of taking, if we ever walked out of that room together, and started planning our trips.
After a series of close calls, a bit of suffering, one resuscitation, and some long-lasting memories, I got wheeled out of hospital cancer free, and 18kg’s lighter.
We soon stumbled onto Betsy – the truck of our dreams, and the dream grew into a global expedition that would start as soon as we could finish building our full-time home on wheels.
We focused on assisting other NPO’s and causes where and whenever we could, and built our business concept so that we could work while traveling. We established a range of sustainable products, started doing trading markets over weekends, and working on Betsy throughout the week.
The international Fanconi Anemia community became somewhat of a priority for us, and through running the support group for people and families with FA in South Africa, we were made aware of a serious issue that seemed to suit our journey to the T. Many of the families were looking for stem cell matches, as they too needed the same treatment, and some have sadly passed away before finding them.
After a bit of research, we found that the registry was not diverse and it turned out that a match is highly dependent on race and ancestry in a patient/donor’s DNA. We extended our horizon’s and included Europe, and Asia in our planned venture.
On World Marrow Donor Day on the 16th of September 2023 we hit the road on the first inter-continental stem cell donor recruitment drive – Matches on the Map in partnership with the South African Bone Marrow Registry.