Blog update from Gabi Lowe (Jen’s mum)
It’s been a while since any of the family blogged and for that we apologise. The past few months have been a particularly busy time coming to grips with the new intravenous treatment plus the logistical and emotional adjustments that go with it. Its complex and invasive – that is for sure – but having said that, there is no doubt that the management of it has gotten easier. The mixing of medication, changing cassettes, lines, pumps, and dressings used to take two and a half hours a day but now takes approximately one hour a day. Stuart (Jen’s dad), Kristi (Jen’s sister) and I feel like fully fledged nurse. Together with our delightful Lizzie (who is a fully fledged nurse) we have done numerous emergency care courses in the past two months so that we can be one step ahead of Jen’s needs at any given time; and be equipped for emergencies.
We have also had my gorgeous niece, Tayla, staying with us from Sydney Australia for two months. What a joyous time we had. Tayla is a breath of fresh air, positivity, love and energy – that is just her nature. Thank you Tayla for sharing this time with us; the highs and the lows, the fun and laughter. You have been a phenomenal support to all of us and especially to Jenna as she recovered from the initiation of the new IV treatment.
For the longest time Jen has had absolutely no physical improvement on the new treatment – that has been very hard to bear .. but last week we began to detect a slight difference in Jen’s energy levels. This is just about right as Dr Badesch did warn us to be patient. Jen has advanced disease and we should expect 2 – 3 months before any improvement shows. Our Jen is such a brave heart – she tolerates painful and awful side effects with dignity and courage; and it’s not as if these side effects will ever leave her. Each time they become tolerable we must up the dosage again. It will be many more months before a full dose is achieved.
Thank you for the really beautiful responses to the insert that appeared on the television programme “Hello Doctor” in January. It was an emotional day of filming for our family just days after Natalie’s Memorial service. The programme has however helped many people to better understand what we are going through and has already helped Jenna and other patients suffering from a rare diseases to gain more support. Here it is …
Since our last post Jenna has graduated high school and even though she was so ill during final exams (she sometimes had to be woken whilst writing) she achieved 7 distinctions ranging from 91% to 97%. We were proud to be invited to join Jenna at the residence of the Premier of the Western Cape where, along with Lethu Ntshinga and Jen Van Heerden from Herschel, she was awarded the Premiers Merit Award for Academic Excellence. Jenna has subsequently been awarded a faculty scholarship to the University of Cape Town and is looking forward to being on campus from next week.
If you have been following us on Facebook you will know that we have been madly planning a spectacular Valentines Picnic for Friday the 14th of Feb. Thanks to Gabi’s Angels (Karen, Melissa and Carlie) and the Three Oaks Foundation (Struan, Peter and Mark) a fabulous team has come together to create a night that promises to be magical and full of love. We are delighted that tickets are completely SOLD OUT and thank all of you who are attending for your support. A special thanks to those people who, though they cannot attend, or could not secure tickets, have donated to the Jenna Lowe Trust.
We promise to post pictures of the Picnic and tell you all about it in our next blog.
Until then, thank you for the continued love, prayers and practical support extended to Jenna and our family. You help more than you can ever know.
With love and thanks – GABI