Wednesday 9:20 PM update: some clarification regarding the pain. It has not really been reduced and unfortunately she's feeling mostly rotten. The reason it's tolerable is increased oral meds. Getting out of the hospital was dependent upon finding the balance to eliminate the IV meds while relying solely on the oral/patch meds. Given the pain was increasing during the 12 days in the hospital... it was a moving target. With that said, we celebrate being discharges and take it one day at a time.
As written in the noon thread, Madison starts the immunotherapy Thursday 8/17. It will be a half hour IV bag, and the next treatment will be in 1-2 weeks. We're hoping and praying for maximum effectiveness with minimal side effects, having faith it'll stop the growth and ultimately start shrinking the masses quickly. The unfortunate 'reality' part of this equation is hard to ignore. She had visitation requests today... but just she's just not up to it. Common sense might suggest she's out of the hospital, she must be feeling 'better', less pain, right? She must be 'getting' better too, look at that smile in the pics, right?! Unfortunately not the case. Just more meds required to tolerate increasing pain. So please don't stop asking to visit! If you don't get a timely reply, know she loves you too, we love you... just rotten timing.
Love,
The Joneses
Wednesday 12:50 PM: Madison returned home from the hospital last night. Both updates yesterday were brief because there was a lot going on. She got some solid sleep last night, awakened by pain in the wee hours but had the meds to take, then able to go back to bed.
We wrote about Faith on many levels: spiritual faith, faith in the meds, faith in the expert medical teams. We wrote about hope... not losing it or losing faith either. That said, a dose of reality that she is keenly aware of. Madi has angry and aggressive tumors that metastasized to her chest in June or July. Given it's a bone cancer, unfortunately it's destroying several ribs, hence the significant pain. While the pictures taken (post below) show a smiling and twinkle-eyed Madi, that was the sweet-spot when she wasn't in too much pain, but wasn't feeling too dopey from fresh meds. All things considering, SO glad to have her out of the hospital.
Keep the faith, have hope, lots of people saying prayers. I think family and friends following along are aware of the reality, but we celebrate little victories like being discharged from the hospital, but we can't focus solely on faith and hope because Madi has a realistic grasp of all three... Faith, Hope, but her reality.
Love,
The Jones Family
As written in the noon thread, Madison starts the immunotherapy Thursday 8/17. It will be a half hour IV bag, and the next treatment will be in 1-2 weeks. We're hoping and praying for maximum effectiveness with minimal side effects, having faith it'll stop the growth and ultimately start shrinking the masses quickly. The unfortunate 'reality' part of this equation is hard to ignore. She had visitation requests today... but just she's just not up to it. Common sense might suggest she's out of the hospital, she must be feeling 'better', less pain, right? She must be 'getting' better too, look at that smile in the pics, right?! Unfortunately not the case. Just more meds required to tolerate increasing pain. So please don't stop asking to visit! If you don't get a timely reply, know she loves you too, we love you... just rotten timing.
Love,
The Joneses
Wednesday 12:50 PM: Madison returned home from the hospital last night. Both updates yesterday were brief because there was a lot going on. She got some solid sleep last night, awakened by pain in the wee hours but had the meds to take, then able to go back to bed.
We wrote about Faith on many levels: spiritual faith, faith in the meds, faith in the expert medical teams. We wrote about hope... not losing it or losing faith either. That said, a dose of reality that she is keenly aware of. Madi has angry and aggressive tumors that metastasized to her chest in June or July. Given it's a bone cancer, unfortunately it's destroying several ribs, hence the significant pain. While the pictures taken (post below) show a smiling and twinkle-eyed Madi, that was the sweet-spot when she wasn't in too much pain, but wasn't feeling too dopey from fresh meds. All things considering, SO glad to have her out of the hospital.
Keep the faith, have hope, lots of people saying prayers. I think family and friends following along are aware of the reality, but we celebrate little victories like being discharged from the hospital, but we can't focus solely on faith and hope because Madi has a realistic grasp of all three... Faith, Hope, but her reality.
Love,
The Jones Family
