The Monday night Violet died passed it rained for the first time in a while. On Tuesday, Jacaranda Trees everywhere had flowered. We took it as a sign that you’re in heaven smiling down on us! Jacaranda Tree at the entrance C3 Church Bridgeman Downs Violet's Hearse passed under the Jacaranda Tree at the entrance of church as she passed through the guard of honour on her journey to her final resting place at Pinnaroo Lawn Cemetery ...
At 12 years and 6 days old, this evening Violet passed away at home. I couldn’t believe in a God who would give my child cancer. I don’t. I believe in a God who loves deeply. I believe in a God who takes what the enemy meant for evil and turns it into good. I believe in a God who gives us the strength to get through. I believe in a God who will take care of my little girl for eternity. ...
Domestic and Family Violence is not ok. Joking about Domestic and Family Violence is not ok. Recently I called out someone for making a passing comment about “floggin’ a kid”. I knew it was more about “roughhousing to build a connection with a child” rather than actually physically flogging/harming/beating the child. But I couldn’t let it pass, I made comment, what followed wasn’t pleasant, but I’ll go into that later. ...
I don’t think Dulux were aiming for deeper thought when they created this colour. But it’s definitely got me thinking… Sea Kelp Seek Help Our minds are fascinating. Keeping them healthy is something that’s had much more awareness in recent years. But unfortunately, still carries some stigma. I think this maybe because it’s easier to deal with the things we see (eg. removing a splinter) than the things we can’t (eg. feelings, emotions and thoughts). ...
A few things happened recently where the penny finally dropped for me. I was talking with someone going through a tough time, they were asking me what to do. I said “Breathe”. They responded “What?”. I proceeded to explain as simple as it sounds try and slow your thoughts and focus on what’s happening now by just stopping… And… Breathing… Slower. A few days later redkite was asking what would you say to parent who was just diagnosed. My response was, Breathe. ...
I was just woken for the obligatory middle of the night temperature and blood pressure check. My mind rattling around reminded me of this photo/inspiration, joining dots in my sleep…. Last week was a tough transition back to school for Piper. An encouraging chat with chappy, an uplifting word from a teacher and some prayer from friends turned her week around. One of her chores is to update this board, which she updated with this quote on the weekend. I know she’s in a better place when she does it without prompting. (The harder task is not to get Oliver to jumble it into something less inspirational). ...
Violet’s summary of chemoimmunotherapy is so very appropriate “my last few treatments have been a luxury compared to this” and there’s so many emotions and so much happens it’s hard to capture it all. Hopefully this post and photos will give some perspective of the reality. The Facts / 10,000ft View At a high level we’re following ANBL1821 protocol. However, Violet is excluded from the trial because it’s not her first relapse, which is ok because it gives us some flexibility (ie. push out cycles from to every 3 weeks to every 4 weeks). ...
NOTE: this page is still in development.. I am just testing some links ATM, thank you I created this blog up as a place to write some lengthier detail about what’s going on in the box clan. The goals were: simplicity: both in design and how to create posts limited ads / ad free use my own domain Wordpress was good for a while, the ad’s were minimal In short: ...
Bony growth has stopped. Yay. But disease has progressed in her marrow. No! Not again!! She’s quite unwell. When do you want to start? Tomorrow? Premeds. Long lasting antiemetics. Diuretics. Drip, drip, drip. Hyper hydration. Weigh the output. Familiar friendly faces, in a way we’re home again, but not where we want to be. Ahh, that wasn’t as bad as it could be. Checkup time, 39 degrees, needing packed cells and platelets. What? That’s not supposed to be. A simple temperature and a little sniffle. Not so bad. Neutrophils less than 0.01. Sigh. Neutropenia and a temperature. Not so good. Drip, drip, drip. IV hydration. Antibiotics. ...
In a few days Violet starts the 19th cycle of chemo in her relapse protocol. The duration of relapse treatment is now similar to frontline treatment (circa 500 days). Although frontline treatment was more intense with side effects and inpatient admissions, relapse is just as (if not more) emotionally tiring. Using a water analogy, frontline was like trying to cross a waist deep running stream and relapse is like chinese water torture. With frontline we’d slowly wade our way through, step by step, after a while we could see the other side, the goal, the end of treatment. With relapse we don’t know where the end is, just when we think it’s under control, BAM, new growth, different treatment, a different goal. ...