Hello Madi Fans,
As mentioned in the prior post, Madison has some abdominal swelling. She spoke with a physician Saturday and met with her physician and nurse on Monday: there's something going on... it may be innocent fluid or air build-up but without an MRI or CT scan, there's no telling what's going on. The next steps we can only take each step, one foot in front of the other to make informed decisions. Both physicians suggested the probability of draining it, simple enough, but only imaging will determine the 'why'.
Madison spent the weekend at her moms, surrounded by a couple of BFFs and of course momma-bear... lots of love! Returning to Dad and Angela's Monday (more love), Madison decided it was time to decorate the Christmas tree.
As mentioned in the prior post, Madison has some abdominal swelling. She spoke with a physician Saturday and met with her physician and nurse on Monday: there's something going on... it may be innocent fluid or air build-up but without an MRI or CT scan, there's no telling what's going on. The next steps we can only take each step, one foot in front of the other to make informed decisions. Both physicians suggested the probability of draining it, simple enough, but only imaging will determine the 'why'.
Madison spent the weekend at her moms, surrounded by a couple of BFFs and of course momma-bear... lots of love! Returning to Dad and Angela's Monday (more love), Madison decided it was time to decorate the Christmas tree.
Chatting later about the elephant in the room, Madison said "it's weird... it's going to be my last Christmas". I'd be fibbing if I suggested I wasn't thinking the same thing. None of this is okay (remember acceptance is not agreement). Currently there are no FDA approved drugs, no open clinical trials that are a match based upon her genomic profiling. Given that, are there non-FDA drugs to attach the genetic traits, something in Belgium or Germany or points beyond? No, we had investigated potential medical solutions outside of the US. Given the extreme rarity of her variation of the already ridiculously rare one-in-a-million (so Madi is 1 in 20 million), there's currently no data to support trying anything else, hence the decision she made in September: to live while she can versus pass like a cancer patient.
Looking back: Madison celebrated her life in September, link HERE. It was 50/50 that Saturday morning whether Madison would even be able to attend... she was that weak and in so much pain. But, she made it and it was absolutely wonderful, a beautiful thing! Sunday September 29 was a more quaint gathering with people who are in her daily life. As you can see from the pictures (link above), she looked awesome! Madison had deteriorated significantly in Sep/Oct, and the first part of November. Truth be told, Chatting with her recently, she didn't think she would make it to Christmas.
Love,
The Jones Family
PS. While there were evacuation threats because the local fires and we're locked and loaded to scoot out if need be, the threat has been reduced to only a remote possibility.
Looking back: Madison celebrated her life in September, link HERE. It was 50/50 that Saturday morning whether Madison would even be able to attend... she was that weak and in so much pain. But, she made it and it was absolutely wonderful, a beautiful thing! Sunday September 29 was a more quaint gathering with people who are in her daily life. As you can see from the pictures (link above), she looked awesome! Madison had deteriorated significantly in Sep/Oct, and the first part of November. Truth be told, Chatting with her recently, she didn't think she would make it to Christmas.
Love,
The Jones Family
PS. While there were evacuation threats because the local fires and we're locked and loaded to scoot out if need be, the threat has been reduced to only a remote possibility.
