campaign from Jen’s bed
Jen on her way to the prefects’ dance
Alex – friend and Jen’s matric dance partner
Jen and Daffy
Kristi and the love of her life … Riaan!
Jenna and Camilla
Kristi sings ‘I Need More Time’ at Newlands rugby stadium before the Stormers match and (bottom left) Jen thanks the crowd for their support
Jen thanks the crowd for their support
Gabi mixing Flolan in her cabin on Reach For A Dream cruise
CHAPTER 13
Reality dawns
One of the curses of PH is that it’s a curiously “invisible” illness. Unless you knew Jen really well, it was impossible to tell how sick she was. She appeared so normal and calm and had become adept at hiding her breathlessness. It was easy to misunderstand why she didn’t hop up when an adult walked into the room, or rush to help stack a dishwasher or clear the table. If you didn’t know any better, you could assume laziness. She hid her struggle and so it was easy to not notice a slight change in her pallor, the leisurely and seemingly casual pace of her walk, or the fact that her lips were darker than normal. Dark lips are the mark of low oxygen saturation, a look that our Western society deems “pretty”.
Mornings were tough and getting to school on time impossible. I would take Kristi, then go back to wake Jen and help her get dressed. She was dizzy and oxygen deprived in the mornings, but wanted no pity. She arrived at school all smiles. It was hard for those who were not in the know to understand what was going on. To some it appeared as if Jen had special privileges, sometimes attending class and sometimes not, sometimes attending social events and sometimes not. I understand it was confusing, but it is also true that teenage girls can be cruel and judgemental. There was some petty politics and doubt as to the “authenticity” of her illness. It was hard to manage, knowing what we did, but luckily Jen’s close inner circle knew just how much she was battling to function and were incredibly supportive. And, of course, she had Kristi at her side, her fierce protector.
On days when Jen had enough energy (her days were highly variable) we encouraged her to see her friends, go to Debating and find ways to remain connected with her social groups and her passions. If we’d based our daily decisions on medical data only, I would probably never have let her leave the house. Thank heavens neither Stu nor Jen would allow that. Regardless of the massive adjustments she had to make, at no stage did Jen play the role of victim or display one iota of self-pity. Where others might have asked “Why me?”, she would ask “Why not me?”
Teenage socialising moved to our home, where it was safer. Kristi spent a lot of time with Jen and her friends and became integrated into her group. We also spent an inordinate amount of time with family, which was comforting. We came to know every inch and corner of the winding road to Shirl’s house, where we all spent many evenings together with Ali, Les and Matt, all supporting each other. Natalie was at this stage being tutored at home; she was able to attend school for a few hours on some days, but recovery from surgery was hard and slow.
Between the heaviness of our medical challenges and the mundanity of endless blood tests, logistics and doctors’ appointments, it would lift my spirits so much to walk down the passage at home and hear Jen and her friend Cami giggling loudly as they played a ridiculous game they called “marry one, date one, kill one”. Between school projects and maths homework they wrote silly lists of boys’ names on pieces of paper, which they then drew out of a container. They would then double over guffawing at the results, sometimes inviting me to join in the silliness as I brought tea and shortbread biscuits. It was so good to see Jen having some adolescent, carefree moments.
But mostly, while friends played hockey, danced or swam, Jen sat quietly and watched, with a graciousness that made me both proud and sad. Sometimes, cuddled up in her bed together, she would tell me how isolating it felt to be physically incapable of joining in. Sometimes I’d notice her watching Kristi in a way that made me wonder if she had moments of fleeting envy, just as there were times, I think, Kristi felt guilty for her health and vitality. It was a complex dynamic to balance. Roles and rules easily confused.
There was a lot going on for our family and we had learned and developed black humour, which, though shocking to outsiders, became an important and powerful coping mechanism for all of us. As Freud said in his essay Humour: “Humour is not resigned; it is rebellious.” Natalie and Jenna were particularly observant, quick-witted, wry and funny – they truly led the way when it came to dark humour – and I think this is exactly the point: black humour has the ability to “assert itself against the unkindness of real circumstances”.
It helped us deal with the terrible uncertainty. Jen was clearly very sick, although her diagnosis was not yet confirmed, and Natalie’s recovery was uncertain. Just as we were forced, in a very real way, to stay in the moment and squeeze out all the joy that we could, it also felt as though the Sword of Damocles was hanging over the heads of two of our much-loved children.
On the 12th of April we were dealt a heavy blow. A follow-up PET scan revealed a recurrence of Natalie’s tumours. It was devastating. Shirley knew all too well what this meant and moved quickly to get Natalie back to her doctors in Boston.
By mid-April Jen had been on Warfarin for a while. There were some hopeful moments of improvement, but they didn’t last. She came down with a chest infection and within days her severe chest pains returned. Her breathlessness was extreme. We went directly to see Prof.
A chest X-ray showed significant deterioration since January and “blunting” on either side of her lungs (mosaic perfusion and bilateral peripheral pruning in the small vessels). Prof. arranged a Doppler – a non-invasive ultrasound – of Jen’s legs, pelvis, abdomen, neck and upper limbs. A Doppler is done by bouncing high-frequency sound waves (ultrasound) off circulating red blood cells to estimate the blood flow through one’s blood vessels. A regular ultrasound uses sound waves to produce images but can’t show blood flow. A Doppler can. The idea – and, weirdly, our great hope – was that we would find a thrombosis somewhere that could explain the cause of the emboli. If so, then we would insert an IVC, an interior vena-cava filter. The Doppler checked Jenna’s entire body. Nothing. There was no thrombosis and the CTPA had shown no evidence of a proximal clot amenable to surgery. Small- vessel pulmonary emboli in children or adolescents normally have a predisposing cause or evidence of thrombosis. Not so in Jenna’s case. It was a confusing picture.
Jenna’s bilateral chest pains were becoming increasingly frequent, despite anti-coagulation, and Prof. felt
