Hospital schedules while necessary, truly suck... even with excellent care. There is no day, no night... people coming in all day, all night. Why would they draw blood everyday at 5-6 AM? So it gets processed by the lab, and physicians have current info when they make their morning rounds... one of many zero-dark-thirty examples.
Madi was hospitalized for three days, three nights. Her temperature came down and has been normal but she's had mind-melting headaches, which seems to fuel nausea. The doctor ordered an MRI of her melon today, all reported normal. Stress factors include but not limited to knowing bone cancer can metastasize south to soft tissue in the chest... but can it travel up? Here and now, not(!) thank you Lord.
She was discharged late Sunday which took traveling to UCSF today off the table. If Madison feels up to it, we'll head north ~7AM, completely her call. We considered flying (how can you not, especially with mums Southwest points : ) Given hospitalization tends to knock the wind out of everyone, going through the airport systems at Burbank and then again at SFO would be absolutely exhausting. Flying offers zero opportunities to nap and eliminates departure options. While driving isn't optimal, she can recline/nap the whole way. The added time to drive really is insignificant: the benefit... we can leave whenever we want to, and don't have to train, taxi, or Uber to/from SFO to Mission Bay.
So if Madison feels tomorrow morning like she does now, she's calls it a 'go'. Her decision: if she feels she's not up to it, we defer a day or two. Part of the trial criteria is CTs, blood-work, EKGs as required. Then... if all looks good, another four weeks of meds are offered. She has two additional days of meds here and now, so that's a good buffer.
Updates to follow, additional info in the threads below, and we'll update more here as this 'journey' evolves. To see the rest of the July posts, press <<<Previous on the lower left below.
Love,
The Jones Family
Madi was hospitalized for three days, three nights. Her temperature came down and has been normal but she's had mind-melting headaches, which seems to fuel nausea. The doctor ordered an MRI of her melon today, all reported normal. Stress factors include but not limited to knowing bone cancer can metastasize south to soft tissue in the chest... but can it travel up? Here and now, not(!) thank you Lord.
She was discharged late Sunday which took traveling to UCSF today off the table. If Madison feels up to it, we'll head north ~7AM, completely her call. We considered flying (how can you not, especially with mums Southwest points : ) Given hospitalization tends to knock the wind out of everyone, going through the airport systems at Burbank and then again at SFO would be absolutely exhausting. Flying offers zero opportunities to nap and eliminates departure options. While driving isn't optimal, she can recline/nap the whole way. The added time to drive really is insignificant: the benefit... we can leave whenever we want to, and don't have to train, taxi, or Uber to/from SFO to Mission Bay.
So if Madison feels tomorrow morning like she does now, she's calls it a 'go'. Her decision: if she feels she's not up to it, we defer a day or two. Part of the trial criteria is CTs, blood-work, EKGs as required. Then... if all looks good, another four weeks of meds are offered. She has two additional days of meds here and now, so that's a good buffer.
Updates to follow, additional info in the threads below, and we'll update more here as this 'journey' evolves. To see the rest of the July posts, press <<<Previous on the lower left below.
Love,
The Jones Family
