Since Madi's May appointments at UCSF, her chest and abdomen can get really really sore, so much so it would imply that the new meds perhaps lost effectiveness. Not the case. (<- read that again... not the case). But we gotta tell you... the past few weeks have been somewhat of a thrill-ride. The more she does, the more exposure to pain in her chest/abdomen. A few down-days didn't seem to help and severe pain in the chest implies to any lay patient and parent that something may very wrong ... getting a plan-B is in order... which we have, though process being IF the meds lacked effectiveness (which we learned this week they haven't), we'd know which path to take on the next steps of this journey.
In the middle of XMO camp this week, she took a 24 hours turnaround trip to UCSF on Tuesday. The pain is likely situational/positional, and the principle investigator/physician remains very pleased with the effectiveness of the trial meds. If Madi overdoes it or even sleeps wonky, her pleura (metastasis location) can flare up intensely with internal swelling and whatnot. So what's a girl to do...
...Return back to XMO winter camp again Tuesday night as a counselor leading blind and sight impaired youth. Monday, A water park. Tuesday, hiking (while Madi traveled to and from SF... not sorry she missed that one : ) Wednesday, boating and knee-boarding at Castaic lake. Today, surfing and tomorrow Friday is Go-cart racing.: the blind kids race the clock while a counselor coaches them via earbuds in their helmets. Then, the counselors race the clock. Fair enough, aye?! Not! The counselors visors are blacked out so they're racing blind as well. I think archery is in the agenda again this week... what can go wrong?!
Funny thing... if mom or dad told her she couldn't go... she wouldn't not go. Her stubbornness is what helped fuel her tenacity to plow through chemo and radiation, and recovery from the various surgeries over the past few years... the Unsinkable Madi Brown.
Thanks for taking this journey with us, and for the prayers and positive energy!
Love,
The Joneses
In the middle of XMO camp this week, she took a 24 hours turnaround trip to UCSF on Tuesday. The pain is likely situational/positional, and the principle investigator/physician remains very pleased with the effectiveness of the trial meds. If Madi overdoes it or even sleeps wonky, her pleura (metastasis location) can flare up intensely with internal swelling and whatnot. So what's a girl to do...
...Return back to XMO winter camp again Tuesday night as a counselor leading blind and sight impaired youth. Monday, A water park. Tuesday, hiking (while Madi traveled to and from SF... not sorry she missed that one : ) Wednesday, boating and knee-boarding at Castaic lake. Today, surfing and tomorrow Friday is Go-cart racing.: the blind kids race the clock while a counselor coaches them via earbuds in their helmets. Then, the counselors race the clock. Fair enough, aye?! Not! The counselors visors are blacked out so they're racing blind as well. I think archery is in the agenda again this week... what can go wrong?!
Funny thing... if mom or dad told her she couldn't go... she wouldn't not go. Her stubbornness is what helped fuel her tenacity to plow through chemo and radiation, and recovery from the various surgeries over the past few years... the Unsinkable Madi Brown.
Thanks for taking this journey with us, and for the prayers and positive energy!
Love,
The Joneses
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