From Jen’s mom, Gabi … Dec 5th 2013

The juxtaposition of extremes is making life feel positively surreal… watching a town full of Matric students quite literally throw caution to the wind whilst our Jen must carefully pick what bits of Plett rage she can sample so as not to miss out on the fun. Staying mindful to enjoy today whilst emotionally preparing for the enormity of tomorrow I have been using the mornings (whilst Jen sleeps) to walk on the beach and fill up my soul with the profound beauty of nature. I am now ready. Whilst others pack and prepare for their year-end celebrations and travel to exciting places, we face a chapter full of uncertainty with butterflies in our tummies but hope in our hearts.

Tomorrow (Friday 6th) as Dr Badesch and Nurse Zupancic board a flight from UC Denver Colorado to the tip of Southern Africa,  Jenna, Camilla and I will drive back to Cape Town from Plett so that Jen can have a full day of rest on Saturday before their arrival. On Sunday we will welcome these extraordinary doctors into our home for lunch and a detailed case history.. and on Sunday night Jen will check in to ICU at the UCT Academic Hospital. It seems she will be in ICU for 5 days or more, and then into a general ward for a further week or so. We hope to have her home in time for Christmas with the family and Tayla (Jen and Kristi’s beautiful cousin) who is travelling here from Sydney Australia to be with us.

The nursing room (now called the “Drug Den”) at home is ready for the 35 step sterile process that the whole family will need to learn in order to mix the Flolan for Jenna’s infusion every 24 hours. She will never be off her pump, not even for a minute, and the infusion is changed every 8 – 12 hours but the medication is only mixed every 24 hours. It is a high care, critical scenario that we have had to plan and prepare for very carefully and we are delighted to have Lizzie Brierley (a fabulous peadiatric nurse) join us as part of Jen’s care team. Although we don’t know exactly what the next few months hold we are as ready and prepared as we can be and I know with every fibre of my being that the dignity, grace, courage, determination, strength and drive that Jenna has shown in completing her matric year will be used to dig deep and make this medication work for her.

To the many of you that will be praying and meditating in solidarity with us on Monday … here is what you are asking for … that the operation goes smoothly, that Jenna remains stable at all times, that her body accepts the medication and adjusts to it without too many awful side effects, that the Flolan greatly improves the quality of her life and buys us many happy and healthy years.

Your thoughts, messages, love and support are GREATLY appreciated … please keep them coming, they give us strength. Feel free to phone or sms any time – we will answer if we can and more than anything send our Jen messages of support – she will need them all!

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