Madi's home and as mentioned below, is managing the pain fairly well! Several doctors reiterated that if you're in pain while awake, you haven't taken enough. If you're asleep a lot of the day, too much. Madi has slow burn 12 hour time release, and high octane instant release. The 12 hour slow burns can be taking every eight: the key seems to be maintaining that balance and use the fast relief when waking up and if/as behind the pain.
- DNA sequencing will be performed looking for specific genetic traits and gene expressions... an negative expressions. Ideally tissue for this is from her original surgery in 2013, pre-radiation and pre-chemo samples versus the June 2014 surgery. The 2013 slides are being located and will be sent to her new oncology team for a deep dive.
- She signed the paperwork today for the new trial opening in Santa Monica, LA, and other locations globally in August. These two drugs are approved in Europe and chordoma experts there have tested them with very promising results.
- We're in the process of scheduling the chemo port: and she'll likely start chemo August 1. Mentioned below, the term "off label". It means if an FDA approved drug for leukemia also shows effectiveness for breast cancer, insurance companies routinely deny them for breast cancer because it's a "leukemia drug" branded by the FDA. If declined, the medical team will contact the manufacturers soliciting 'compassionate use'. This example would benefit the manufacturer by providing data for their drugs effectiveness with breast cancer... one lay dad's opinion.
Her oncology team is hands-down awesome. Each physician offered their direct cell numbers and non-vetted email addresses... impressive!
Today is the first day in a week Madi hasn't given blood. Today is the first day she wasn't in the hospital or traveling to/from or staying in San Francisco, or fighting traffic getting to/from Santa Monica and all things considered, a pretty okay day! Don't hesitate to text Madi that you love her, are thinking of her, etc. I suspect people may think she's curled up in a ball sucking her thumb. Not so! Pictured below she's napping on the couch: both dogs can feel a disturbance in the Force.
On Tuesday things almost seemed like they're falling apart. In just two short days things are falling in to place.
The Jones family