So it's always something, aye? An unfortunate case of pneumonia is slowly getting better with meds, but Madison's staying busy given it's not infectious... as far as you know. She is confident it's not an effect of the rogue lung, just a timing challenge when she verped (a wee bit of vomit and a burp)... a bit of that gurk (glock plus verp : ) traveled down the wrong pipe in to a lung.
So less fluid being drained every four days... so what's that mean? Exactly! We're not doctors but remain cautiously optimistic. Fluid that was accumulating ~125ml (1/2 cup) daily (drained every four days), is now less than a tablespoon accumulating daily... over a tenfold decrease in fluid build-up since starting the meds. Immensely less troublesome to lay patients and parents alike. Thank you to the research and scientist communities for making meds like these available to rare cancer patients, and a special shout out to Him... thank you God.
Monday brings another 2-3 day trip to UCSF in San Francisco, number six this year. This one should be rather routine ... a flurry of appointments that can be done in a couple of days. The 8-week mark is in two short weeks. That will likely be 3-4 days with new MRI, CT, x-rays to compare against those take in January.
So less fluid being drained every four days... so what's that mean? Exactly! We're not doctors but remain cautiously optimistic. Fluid that was accumulating ~125ml (1/2 cup) daily (drained every four days), is now less than a tablespoon accumulating daily... over a tenfold decrease in fluid build-up since starting the meds. Immensely less troublesome to lay patients and parents alike. Thank you to the research and scientist communities for making meds like these available to rare cancer patients, and a special shout out to Him... thank you God.
Monday brings another 2-3 day trip to UCSF in San Francisco, number six this year. This one should be rather routine ... a flurry of appointments that can be done in a couple of days. The 8-week mark is in two short weeks. That will likely be 3-4 days with new MRI, CT, x-rays to compare against those take in January.
Last summer Madison visited her uncle Jeff who helped bring her inner bad-ass and some old-school Nebraska redneck to the surface. Love it! We like to think of it as "hey chordoma... take THAT"! Video at this link.
Thanks for following along, and for the positive energy and prayers. We'll post updates mid next week after we meet with the UCSF team.
Love,
The Joneses
Thanks for following along, and for the positive energy and prayers. We'll post updates mid next week after we meet with the UCSF team.
Love,
The Joneses
