When the opportunities presents themselves, Madison is staying as busy as can tolerate. A week ago, she had declined in to a 36 hour hibernation, but with the introduction of a new med, she seemed to rebound remarkably.
This past Saturday the Chordoma Foundation and MDA in Texas hosted a community conference which is recorded HERE. Later in the morning I let Madison know I was watching it live and online. She asked if they have found a cure. "Sorry sugar, not yet" to which she simply replied "dang-it."
Madison and her mom Colleen drove down to Carlsbad yesterday, joined by a Nathan, who is a BFF of Madison's. Pictures of their activities will follow as those plans unfold.
Love,
The Jones Family
This past Saturday the Chordoma Foundation and MDA in Texas hosted a community conference which is recorded HERE. Later in the morning I let Madison know I was watching it live and online. She asked if they have found a cure. "Sorry sugar, not yet" to which she simply replied "dang-it."
Madison and her mom Colleen drove down to Carlsbad yesterday, joined by a Nathan, who is a BFF of Madison's. Pictures of their activities will follow as those plans unfold.
Love,
The Jones Family
