Team Ruby

03/06/2023

05/04/2023

Shout it from the rooftops!
Such great news!
Thank you all who advocated!

08/03/2023

We haven’t posted in a while. And the main reason for that is, we have nothing CF to post about.
Since starting Trikafta last August when Ruby turned 12, Cystic Fibrosis has not been the main focus in our life. Who would believe it!
Before Trikafta, Ruby was hospitalised every few months. Her lung function went into the 60s, she was tired, she missed most of school, I was missing work, we were always in close contact with clinic.
It’s not all quite roses yet, but we now have enough time to stop and smell the roses thanks to Trikafta.
Just image what permanent damage could have been prevented if she was able to take this medication before she hit pre-puberty.
The road to access for our younger CF kids seems long at them moment. And it just seems so unfair. I wish that everyone one who would benefit from this drug was able to access it, and at least get a chance to see if it is right for them. But instead we are reliant on money and politics.

~ Trikafta for 6-11 going back to the PBAC 😡 ~

Disappointingly Trikafta for 6-11s is going back to the PBAC as an agreement has not been reached. It will be discussed this week with the outcome released on April 21.

This is not good enough Mark Butler MP Vertex Pharmaceuticals. Heading back to the standard PBAC process leads to further uncertainty with the approval and timeframe, with July or Aug as the potential minimum listing date.

Please fast track this process as the more time we wait, the more time we lose. Thirty other countries have prioritised the lives of the young ones with CF, please don't continue to leave Australians behind.


Anthony Albanese Senator Anne Ruston

10/09/2022

Hair washed, trimmed and braided in preparation for our upcoming hospital admission.
Knotty hospital hair is a massive stress factor and just another painful thing to deal with. Hopefully this will make life easier for the next few weeks.

Oh, I cannot braid very well, this was done at , Ruby liked the washing part the best. After hospital, she wants her hair styled like Cher from Clueless..💇🏼‍♀️

27/08/2022

Ruby left hospital last Friday, after taking her first dose of Trikafta! The same time she was coming home from hospital, I was taking her older sister into hospital with what ended up being appendicitis. Eliza had her appendix out and has been recovering at home.
It’s been a crazy week. Stressful and exhausting. We are all over being in hospital but very aware that we will be back soon with a planned admission in September.
Taking your medically low (no!) maintenance child to hospital is a different experience…not that I want to do it again.
Ruby is very diligent in taking her Trikafta, she keeps an eye on the time and reminds me when it’s pill time. She makes herself avocado toast to eat it with and hasn’t complained about it once. She was initially worried that she didn’t feel any different. But I see a difference with energy and quality of sleep. And no coughing! When she came home from school yesterday, she excitedly told me that she ran from one end of the long path to the other, without getting puffed out. It’s all these small moments of “normality” that she has not often experienced before. We have some follow up tests at the end of this week, and it will be interesting to see the results.
Thank you to all who helped getting this drug approved, we think of all the support we got every time we pop a pill!

12/08/2022

We came to clinic on Wednesday to start There was a seed of worry in my brain as Ruby started having pretty acute pain in a certain part of her chest the day before. I even packed an overnight bag, but left it at home because I didn’t want to jinx us.
Well a significant drop in lung function combined with a pretty crappy X-ray showed that Ruby has “round pneumonia”. So our trikafta has been delayed for a short while and we are in for a mini tune up. Ruby was absolutely not happy about staying in, and especially about missing out on drama rehearsals.
We are in the same room we were in 3 years ago, my mermaid tail art is still on the window 😳
Steak from Uber Ears thanks to generous vouchers changed the mood a bit.
This is just a small speed bump in the road. Trikafta is in our sights, along with a splenectomy next month. These 2 things should really help Ruby’s health long term.

11/07/2022

Our last full day of this tune-up.
Physio
Lung function
Numbing cream for Omalizumab injections
Hanging out in the Starlight room again - this place is a sanity saver
And enjoying treats from UberEats thanks to generous gift vouchers. Sure beats hospital food!

07/07/2022

Another day into the tune up. Ruby has won the quiz 3 times in a row, so she got to run her own quiz.
Food is our guilty pleasure while here. Souvlaki for lunch!
Dressing change of the picc line was ouchy.
Early tomorrow morning Ruby is getting an ultrasound of her spleen in preparation of her upcoming splenectomy.
We were going to go for a nighttime art tour of indigenous artists but Ruby now has a headache so we will save it for another day.

05/07/2022

The third admission for the year for Ruby is currently underway. She’s now at day 8 and the tune-up is doing what it’s supposed to be doing. After a rough start for her, things are now on the up. She’s had a PICC line placed this time, due to the difficulty in accessing a viable vein and the risk of a midline not lasting for the 2 weeks. She’s one tough girl and endures so much, with so much grace and maturity.

Trikafta starts in about 4 weeks and fingers crossed, it helps to reduce the amount of admissions and she can get on with doing what kids her age should be doing.

15/06/2022

Eye health test to prepare for Trikafta!