be the best mother ever.
My only hope is that things develop fast enough that a cure turns up. I’m seriously clinging to it. It has to happen. I don’t want to die. It’s not fair.
I really need to sleep now. I’m going to try soon …
“Every day is so wonderful
But suddenly, it’s hard to breathe.”
I’m going to have to live life in the moment. Speak my truth. Take what I want.
Things I want to do:
Diving lessons. Stardust. Get scooter. Mani. Haircut. Buy Clinique “Happy”. Watch Burlesque and Titanic. Do a family photo-shoot. Do a shoot with Kita. Do a test shoot … if I’m too sick to do proper modelling work, I definitely want to do a test-shoot with mom’s photographer friend. Ace my exams! Write. Read. See Maike and Chaeli.
Jenna’s journal
Tuesday, 22nd May 2012
11 am; English office
I should be studying. I am not, though. I just Googled “dealing with a terminal illness”. Never thought I would have to. To think that I used to worry about getting cancer when I reached middle-age. Or was stressing about skin cancer. I’m not going to live long enough for any of that to take its toll. Neither is walking on my toes going to be an issue. It’s most likely that my hips and back will suffer from this immobility. All that work to get me fit. To never have a filling. To stretch me out. What was the point?
Although I suppose the fact that we were planning for the future was a privilege in and of itself.
I’ve had an incredible life, I really have. Maybe I have used up my share of happiness? Maybe that’s why … like I need an expiry date or something.
So apparently the stages I will probably go through work something like this:
Shock; Denial; Anger; Grief; and Acceptance.
I could probably have made that up myself. Will I write people letters? What will my last words be?
“A penny for my thoughts?
I’ll sell them for a dollar.
They’re worth so much more
After I’m a goner.”
“… Funny when you are dead how people start listening.”
I think I need to work now. It might be a nice distraction.
Still Tuesday
School: 3:08 pm
Waiting to be collected
English office
I just wrote the start of an autobiographical piece, on my laptop, about finding out I was going to die.
I seriously can’t handle this. I’ve never been so scared in my (unfairly short) life. This can’t be happening. It’s so not right. Not fair. Clearly, I’m still in shock ’cos this feels like a bad dream.
How do I act at school? Partly it’s a nice distraction being here, but partly it feels so fake. If I were being real, I’d be sobbing constantly. Incessantly.
Mom’s fetching me.
In rare moments Jenna would share her vulnerability and pain with me and Stu, but mostly she was private and inordinately strong. She chose to respond with dignity, grace and courage. She imagined her sadness would drive a wedge between her and her friends and believed they shouldn’t have to cope with her fear. So Jen chose to make it easy for people to be around her.
CHAPTER 15
Going to war
News from Boston wasn’t easy. Natalie needed to gain weight for surgery and was having a rough time. This made it especially hard to share the impossible truth of Jenna’s prognosis with Kristi. It was a lot for our family to deal with and we needed help. I searched for a therapist who would be the right fit to help guide us through the multiple ongoing trauma.
And on a practical level, now that we had clarity we needed a treatment plan for Jenna.
The lioness in me had awoken and I wasn’t going to stop. I drowned myself in medical journals. How could we extend and improve Jenna’s quality of life? What therapies were available and where could we find them? What did her prognosis really look like and what could it look like? How could I access the right treatments? Did we need to supplement our local team of doctors with the best expertise in the world? The literature described three pathways to treatment but on the southernmost tip of Africa we had only one, Sildenafil/Revatio. That was not good enough. We needed to find and fund the treatments she needed.
We saw Prof. Wilcox every two or three weeks and Jen kept a meticulous record of her symptoms. It showed us she was systematically and consistently getting worse. We needed additional treatment, fast. I’d started speaking to people around the world, and one particular woman in the UK, who’d been a PH patient for many years, gave me incredible hope. Multiple treatment had successfully extended her life. She was on a drug called Bosentan and had been on it (as well as Sildenafil and Warfarin) for more than a decade. I wanted to get my hands on it.
Prof. Wilcox’s office was small, messy and piled high with stacks of paper files. It always came as a surprise to me when he found Jenna’s file. I kept copies of just about everything I could just in case we couldn’t find something. We had developed a good relationship but at times it was also exasperating.
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