ROCK COMING BACK FROM BOTTOM
Despite living in Rwanda, this family flew to South Africa for little Mieke’s chemotherapy treatments. Mom Helecia Theron shares their story.
Mieke, our eldest, was born in Lusaka, Zambia, where my husband worked as a hotelier. She was perfect, and a perfectly healthy baby – she never got a cold. Although she did take a bit longer to start moving and only did a slow sort-of bum-shuffle crawl, I didn’t think anything of it.
We moved to Tanzania when Mieke was one. She started to walk at 14 months but always held my hand – just like any toddler learning to walk, I thought. Until she tried to climb a chair, grabbed her hip and yelled out in pain. I couldn’t see anything wrong: no wound or bruise, but we started to notice that other movements also caused her to call out in pain. I thought she may have dislocated her hip, so on our next holiday to Cape Town, we took her to an occupational therapist and paediatrician, for check-ups.
And so began the longest, scariest, and most emotionally draining year of our lives.
A TERRIFYING DIAGNOSIS
The paediatrician immediately picked up an issue and sent us for a series of scans and x-rays. Mieke, who was too young to understand all the medical attention, was terrified – we had to pin her down just to keep her still: it was terrible.
A test picked up ”something” on Mieke’s hip bone, but she needed a biopsy. Mieke’s pain seemed to have eased; she had started to walk unassisted, and we were due to fly home the next day, so we naively said, ”No thanks, we will go back to Tanzania, and if her pain returns, we will come back for the biopsy.” Our doctors’ response was urgent, ”No, your daughter needs a biopsy, now.” Time stood still: we realised then that there was something seriously wrong, but until the pathologist briefing us let the words ”malignant tumour, and serious” slip out, cancer never crossed our minds. We were astounded: cancer. Our baby had cancer. It felt like the world had fallen out from beneath our feet.
The biopsy confirmed it: Mieke was diagnosed with Langerhans cell histiocytosis, a very rare condition affecting the white blood cells that behaves – and is treated – exactly like cancer, although it is not cancer.
SCARY DECISIONS
Mieke would need a year of chemotherapy, regular blood tests and scans, but we lived in Tanzania. My husband would not leave Mieke and I to go through this alone in South Africa, so we found Tanzania’s only paediatric oncologist, Dr Scanlan, with an amazing reputation. But she worked in the local government hospital, which really scared us. The private hospital agreed to treat Mieke in their adult-oncology unit, as long as Dr Scanlan oversaw everything. Dr Scanlan threw us our first life line when she explained that it was going to be a long, hard journey, but Mieke won’t die from Langerhans – her condition was very serious, but very treatable. Still, we were overwhelmed: with no idea what the future held for her, or us.
TREATMENT TRAUMA
Mieke would turn into ”beast mode” every time someone came near her with a needle – and she needed a lot of those. The staff struggled to find veins, and so each time she needed a blood test or chemo, she would get pricked 30 to 40 times. She would scream and fight – you have no idea how strong a scared, angry 19-month-old can be! We would have to pin her down on the bed as she thrashed, cried and yelled while the staff struggled to get the IV into her. What should have been a five-minute process was much longer. Mieke was also so angry with me, and there was no way to explain to her that this was making her better. She was just too young.
While treatment days were unspeakably hard and traumatic, the days in between were normal. She was on a very weak form of chemo, so she had no side effects, never felt ill and was a happy toddler.
ROCK BOTTOM
Mieke picked up an infection after her fourth treatment and needed IV antibiotic treatment. No-one could get the drip into her little veins – even the hospital’s most experienced anaesthetist failed, and after pricking her at least 40 times, with her screaming like a mad thing, we decided to give her antibiotics by injection, three times a day. It was an intense, exhausting week – with Mieke screaming every time a medical person entered the room. Eventually I said, ”We can’t do this anymore. I am taking her home.” And
I did. We managed to get her to drink the meds, but even that was a struggle. We fell behind on the weekly chemo sessions, but we were so emotionally traumatised, we almost didn’t care.
We pinned our hopes on her threemonth scan results being clear (not unusual with Langerhans), but the tumour was still there: our world collapsed again. We just didn’t know how we could keep putting our child through this. The only other option was to insert a port; despite a higher risk of infection, this meant no more needles.
The Tanzanian team assured us they knew how to access a port, but the first time they tried, it was horrendous. I had to restrain Mieke, her chin kept knocking against the port as she thrashed about. We had hit rock bottom. We tried to be positive, but it was unrelenting. The skin around the port was red, swollen and bruised. It looked so painful, and Mieke still needed months of chemo. We needed a break.
We had learnt by then that you can push some chemo treatment out by a day or two without any serious consequences. So we did. My husband and I just collapsed into bed and cried out hearts out. Mieke’s nanny looked after her, while we cried for two days. We had hit emotional rock bottom and needed to cry all the fear and trauma out. It was the best thing we could have done. It really brought us closer together as a couple and steeled us for the rest of Mieke’s treatment.
Things did not improve over the next few chemo sessions using the port. Mieke still screamed and fought us all with each treatment. When the area around the port became infected, we decided that was it, the port must come out, but not in Tanzania. We flew back to South Africa, where our shocked doctor arranged for Mieke to have her next chemo treatment.
FINALLY, SOME LIGHT…
We were given one nurse. I immediately warned her that she would need a whole team to hold Mieke still. She just said, ”Give me two minutes.” And she was right – it literally really took her two minutes to administer Mieke’s entire treatment. I was thrilled, and devastated that Mieke had gone through all that previous unnecessary trauma. That sealed the deal: my husband resigned, and we moved back to South Africa intending to stay until Mieke’s treatment was complete.
NEVER SAY NEVER!
Almost as soon as we arrived, my husband was headhunted for a job in Kigali, Rwanda. I was not keen, but we agreed that Mieke and I could fly back every three weeks for treatment. We scheduled our nine-month travel plan around birthdays, Christmas and special occasions… and gynae visits! I was pregnant with our second baby. Unbelievably, the timing between doctors worked out, and thankfully Mieke loves flying.
When I was 32 weeks pregnant, we all flew back for Mieke’s final chemo session, followed by a series of tests and scans: Mieke was all clear – the news we had prayed so hard for! Mieke’s little sister, Talia, made a sudden appearance just two weeks later, and we were able to bring her home the day after Mieke’s port was removed. Finally, we were walking in the light at the end of this terribly long, dark tunnel. ●