with Jenna and he, too, asked many questions, fleshing out a full medical history, examining the problem from every angle and feeling out whether Jenna was the anxious type. From her choice of language, how she approached the answers, her demeanour and attitude, it soon became clear to him that she wasn’t; if anything, she was actually underplaying how she was feeling and a little embarrassed by her symptoms.
Dr VC did further tests: full bloods, lung function, a physical examination, chest X-ray, ECG and echo-cardiogram. He was thorough. Jen and I were both hurt when the echo-cardiogram technician implied that Jen was “air-hungry” and she should breathe into a brown paper bag. That wasn’t helpful.
Still we found nothing. There was no apparent or clear explanation. Jen was starting to feel as if she was going mad. We discussed Step Out. “Mom,” she said, “I must go, I can’t not do it. It will be okay, I will just push through. I’m not going to be ridiculed for not doing it. And Dr VC didn’t find anything.” Nevertheless, the physician was concerned. “There is one more test we could do,” he said, “but it’s very expensive and highly unlikely. It’s not a test I would normally do on a 16-year-old girl presenting this way.”
The test, the one we didn’t do, is called a VQ scan. This was the test that would put Jen into hospital six months later. It really is no one’s fault, but I wish we had done it that day. We would have discovered her condition earlier.
Dr VC gave Jenna a pump to ease the breathlessness, and a letter for the school to say she should stop and pull out of the hike if she needed to. I should never have let her go on that hike, but Jenna was determined. I think she feared that teachers and friends would judge her and think she was faking it. Peer pressure is a powerful and dangerous thing. She explained that lots of kids faked injury to get out of the hike. I will always deeply regret the decision we made to allow her to go. I should have trusted my gut, but I overrode it.
Of course, as soon as you are part of a team, halfway to the top of a mountain, there is no turning back. When Jenna got home, she looked absolutely wiped out and exhausted … and ill. She told us how day after day her lungs had literally felt on fire. She was left gasping for air, faint, weak and terrified. Letter or no letter, her group leader and group teacher did nothing about it; in fact, they subtly implied she was seeking attention. Not wanting to let anyone down, she pushed through. There was no cellphone coverage, only a walkie-talkie for emergencies, and the constant unspoken belief that this privileged bunch of girls had to toughen up. I had relied on Jenna and the school’s good sense to make the right choices on our behalf during the hike. They didn’t. I hadn’t taken into account the fact that Jenna was someone who never gave up. It was one of her distinguishing features. But why on earth not a single adult thought to stop her hiking is still beyond me.
With hindsight I am still angry with myself. But at the time we didn’t know about her illness. Nobody knew. We simply didn’t know. This is significant. It is significant because exactly this kind of thing happens to so many pulmonary hypertension patients. They can go for months and often years either being misdiagnosed or undiagnosed, which leads to further damage. It is a difficult disease to diagnose, a rare and “invisible” illness.
Knowing and experiencing this so dramatically, as Jen did on that hike, later became one of the driving forces behind her campaign for early diagnosis.
CHAPTER 10
Asthma, the mad Aussie and a secret talent revealed
Straight after the hike we were back at our GP, and this time we agreed Jen should go to a specialised asthma clinic. Off we went, detailed doctor’s letter in hand, and a thorough history for our first appointment. On paper it looked like asthma, but yet again Jenna’s lung function test was good. It didn’t make any sense. This “red herring” that kept throwing everyone off track is something that happens with pulmonary hypertension. It was obvious that Jen was battling for breath, but it did not reflect in her lung function tests. How did that make any sense? The asthma clinic armed us with a flow chart and blow machine so that Jen could track her lung function twice a day for a month. We needed to see if there was a trend emerging. Meantime, she now had two pumps to ease the symptoms.
It was June 2011 when a bundle of chaotic energy came tumbling into our lives. “Aniko the Australian” had landed. Blonde, busty, with big blue eyes and a distinctive gravelly voice, Aniko fitted perfectly between our two girls in age and personality. “Koko Pops” or “Ko-Ko”, as we affectionately called her, was Jenna’s Grade 10 exchange student from Sydney. She was to live with us for three months. Natalie and Shirl were in rehabilitation in Boston, and Jenna was supposedly on the right medication. The timing was perfect. Aniko was exactly the delightful distraction our family needed. Uncomplicated, boisterous, messy and fun-loving, she had the alter ego of a golden retriever. She moved effortlessly between Kristi and Jen. When Jen needed some downtime the boisterous Aniko could be found giggling with Kristi in her bedroom. They couldn’t have been more different and yet the three of them became firm friends, a tight trio.
The sadness that had been in the house since Natalie’s diagnosis shifted a bit and Jen appeared to have stabilised, or was seemingly not getting any worse. The intensity of watching, listening and being on constant alert had lessened, and we settled into a new routine with our “third child” in the house. Within weeks Aniko had a black eye from a stray hockey ball and had turned my house upside down, but she was a constant source of entertainment, joy and laughter.
Determined to make sure that Aniko loved Cape Town, Jen introduced her to all her friends, and we hosted heaps of get-togethers in between the ordinary business of school and homework. Despite her “asthma”, academically Jenna was shooting the lights out. A valuable member of the school Debating team and top of her class, she took school work seriously but very much in her stride. Our weekends were jam-packed with social arrangements and “touristy” outings as we showed Aniko the Mother City. Signal Hill, Clifton, Table Mountain, The Waterfront, Kalk Bay Harbour, Hout Bay, Chapman’s Peak, Cape Point, the West Coast flowers, Kirstenbosch Garden, markets and restaurants, and even shark-cage diving outside Hermanus. You name it, we did it. And we loved being tourists in our own city. On Aniko’s 16th birthday, Kristi and I baked a huge cake in the shape of Table Mountain. We decorated it with the Australian and South African flags. If Jen was too tired to participate, Kristi and Aniko would fill the gap. There was so much going on that it was easy for Jenna to hide the fact that she didn’t have the same levels of energy as everyone else.
In mid-July Jen and I returned to the asthma clinic, taking with us her carefully completed lung function chart. “Ah,” they said, “this makes slightly more sense now.” Her lung function was surprisingly good, but her lung capacity appeared different at different times of the day. A confusing picture, but one that implied the possibility of asthma. We were so relieved to have a diagnosis at last … something that could be treated. Pumps, cortisone and meds were prescribed, together with a detailed description of how to manage the asthma and her meds. She would feel better soon, we were assured. What a relief. Jen started her routine and stuck to it. She was desperate to get her energy back. Her breath back.
Meanwhile, Shirley and Natalie were having a rough time in Boston. Stuart planned a trip so that he could help them transition from rehabilitation to housing near the hospital, but instead when he arrived, Natalie was admitted back into Mass General. It was a gruelling visit and he came home quite shattered by what he’d witnessed. Natalie’s halo brace was made up of a plastic vest that immobilised her spine and head. The metal ring surrounding her head was attached by pins to her skull, and though this was not painful for her, wearing the brace was hard. It resulted in complications that made her proton radiation treatment an extremely dangerous exercise. This was the time Natalie reported as the darkest of her journey. I would lie awake at night willing relief for her through the days and weeks of relentless vomiting she endured, praying for protection against the very
