sky is crimson red and Natalie, flanked by Jen and Kristi, is lying atop an ancient cannon, smiling to the camera, arms spread out wide as if she is flying. Shirley and Natalie boarded the plane the next day and we were left trying to hold the pieces of our family together.
Natalie’s diagnosis changed me profoundly. I hadn’t experienced anything this hectic in my lifetime. Helping to run the Circle of Love, advocating for Natalie, and raising funds became part of my life.
I was astounded at how our friends stepped up to support us during the tumultuous years that followed. There were so many acts of lovingkindness. My friend Nici conquered the icy open water swim from Robben Island to Green Point to raise funds for Natalie. Friends donated to her trust, hosted their own events, donated products, trips and paintings for auction, and helped sell tickets to our fundraisers. It was truly humbling.
Some profound connections developed during this difficult time. One such connection was with my neighbour, Mary. Over the years our families were friendly but not particularly close. When Mary had gone through chemo a few years earlier, I was glad to be able to bake her an apple crumble or take a casserole for the family on treatment days. I had so much respect for how she got through her battle with breast cancer. So when Mary suggested we start walking together more regularly as a healthy way for me to manage my stress, I jumped at it. What started out as walking became “wogging” – a rather pathetic combination of walking and jogging – and then after a while running. I never imagined I would become a runner, but I grew to love it. We went consistently three to four times a week and slowly Mary’s friendship developed into a lifeline for me. Because she lived so close and our time together was so regular, she knew all about the complexities I was dealing with.
By then Glynis, who had covered for me at Woolworths when I went on maternity leave, had left the business world and was a qualified and practising clinical psychologist. She was another lifeline for me in a world turned upside down. Glynis knows how to listen in a way that few people can, without any shock or judgement, and gives astute and caring advice. I needed that. I also grew even closer to my beloved friend Vanessa, for whom nothing was, or ever is, too much to ask. She had a deep understanding of the challenges our family was facing as her stepdaughter had been seriously ill for many years.
There are so many significant relationships that carried me through that time and I really don’t know how I would have coped without them. No one should have to walk alone.
By April, Natalie had completed proton radiation and she underwent two very long and dangerous surgeries one week apart. It was beyond intense, but the ground-breaking procedures were declared a success. Everyone was elated! After she stabilised, Natalie was fitted with a halo brace – a brutal experience in and of itself – and she began the long and extremely challenging road towards recovery. By May, she was transferred to a rehabilitation centre where she would re-learn to sit, stand and walk.
There were highs and lows, and complications, and it was challenging in the extreme. Shirley lived in the hospital with Natalie, constantly at her side. In the meantime, we worked hard to raise additional funds and sponsorship to ensure they had regular visitors in Boston. Being able to count down the days to see Kola and spend time with him, or be uplifted by visits from loved ones, made a big difference.
We had no idea at the time what further tragedy awaited us.
Part 2
CHAPTER 9
Breathlessness
In February 2011, four weeks after Natalie’s initial surgery and diagnosis, Stuart and I were both back at work while also running Natalie’s Circle of Love. Jenna and Kristi had started their school year.
It was around this time that Jenna first started to show signs of breathlessness.
At first it was subtle, barely noticeable. It was easy to assume this was anxiety related as we were all still in a state of shock over Natalie. When I questioned Jen about her breathing, she acknowledged that while Natalie was very much on her mind – “I am so worried about Natalie, Mom” – she didn’t feel it was anxiety related.
“This feels like a physical thing, Mom,” she confided, “a separate thing.”
Jen may have been a sensitive soul, but she was also pretty sensible, and the truth was that she was more likely to be stoic than dramatic. I kept an eye on it.
Jen’s breathlessness didn’t subside. We became more and more aware of how loudly she was breathing. Initially it seemed exercise induced. Walking down the passage fast or moving pots around the kitchen, slowly and insidiously the breathlessness became more regular. I started to notice it when she leaned over me to read something, or if the girls were working quietly at the dining room table, I could hear her from the kitchen counter. We started calling her Darth Vader to make her more aware of it, thinking that maybe this had become an anxiety-related habit. That memory makes me want to cry now.
Then she started coughing. Immediately I took her to our GP, Kathy. There was a bad cough doing the rounds at the time and Jen was medicated appropriately. A few weeks later we were back at the GP again. The cough had not subsided, and her breathing was still loud. This time Kathy did blood tests as well as a full examination plus a lung function test. She gave us more cough meds and an inhaler pump just in case. We carried on as normal.
Jen was not a complainer. Sometimes I wonder, had she been more vocal about how she was feeling, would she have been diagnosed earlier? I was worried and paid close attention, watching her carefully. It became second nature to listen for the nuances in her breathing. Following Kathy’s advice, we adjusted her diet to contain less wheat and dairy. These kinds of symptoms could indicate an allergy or food intolerance.
That first school term was hectic for both my girls as we tried to maintain their normal lives while dealing with getting Nattie and Shirl to Boston. But one of the things that was stressing Jen out most was a Grade 10 school event that was looming at the end of the first term – a five-day compulsory hike called “Step Out”. It takes place every Grade 10 year and is seen by the school and the girls as a sort of rite of passage. The hike was set to take place in the scenic mountains of Greyton, a small rural town three hours outside Cape Town, in just three weeks’ time.
“I’m really concerned, Mom,” Jenna told me. “The way I am feeling right now I’m worried I won’t be able to cope.” Although Jen looked like a gym bunny, she was in fact the furthest thing from sporty. “Mom,” she implored me, “I really need to get fit again, will you help me?” She had recently stopped swim-training due to her persistent cough, but now that it seemed to be getting better, we agreed we’d start walking together to get her hike ready.
On our very first walk together I got the fright of my life. Maybe, just maybe, something was seriously wrong. Could it be? Within a few blocks Jen was already breathless and when we turned the corner to walk up the first hill my alarm bells went off. She was really struggling. She had no breath. We turned back for home. “This is not anxiety or lack of fitness,” I said to Stuart that night as we got ready for bed. “I am nearly 50 and I coped better than Jen. Something’s not right, I can feel it in my gut.”
The next day I took Jen back to see Kathy. Thorough, caring and as attentive as always, she asked Jen a long list of questions, after which she did another lung function test, blood tests and a complete “check and service”. Again she found nothing. She was perplexed and concerned. Kathy knew Jen well and didn’t take this breathlessness lightly. She sent us, letter in hand, to a well-known local physician, Dr VC.
There were only two weeks left before the hike and we
