yet another update on jim

[Guest guest]

thank you, larry, faith, dutchpat, ruth, and so many others who have

written. it really does help to know so many of you care and are pulling

for our family. how nice it would be for this latest update to include

jim's (and jason's) LDLT surgery date... but it doesn't appear as if things

will move as quickly as we'd like. i know, i know -- all in God's perfect

timing. :-) this, then, is our " latest " update and request for prayer:

praise God -- yesterday morning, jean, jim's local hepatologist's nurse,

assured me she'd move earth and mountains to make sure the two hepatologists

touched base by phone. i was heartened she took careful notes of the three

main points i specifically wanted dr. pockros to stress to dr. fong, for the

purpose of equipping dr. fong to be jim's advocate @ the radiology/pathology

conference tomorrow (thursday, 11/1/01).

time will tell whether or not jean was successful. jim's ERCP has been

faxed up to the USC tx coordinator (despite her saying " they wouldn't need

it " ...sheesh!) and i received word yesterday that it took the tx

coordinator an infinite # of irksome calls, but she WAS finally able to

locate the ct-scan taken on jim last june... which they subsequently lost.

it's an answer to prayer it was found -- because scripps hospital learned

just yesterday a.m. they had " recycled " jim's microfilm (or whatever) copy,

which means USC now possesses the only ct-scan; scripps has no duplicate,

because someone else's information is now stored on that film. yikes!

the coordinator has attached an addendum to jim's new ct-scan for it to be

reviewed/compared along with his ct-scan of june, 2000. it's critical the

two heps connect over this, since the report on the old ct-scan also

contains the infamous " carcinoma cannot be ruled out " phrase which we've

come to know all too well. i asked her when we could expect a report back

regarding the outcome of the meeting... she said later this week, since she

is out of the office all next week.

the tx coordinator was NOT especially encouraging, but i remembered barb

telling me to think only positive thoughts, and i didn't let her rain on my

parade. i was just sooooo relieved USC had found what had been lost for two

weeks! it IS a concern how she continually made a point of stressing how

infiltrative hepatic carcinoma would be an extremely bad scene. but surely,

an MRI would give us a better picture as to what we are facing (jim and i

have already discussed the possibility of paying for this out of our

pockets, if USC doesn't recommend, & /or if insurance balks). if it means

getting an LDLT, then it's a small price to pay.

what the people @ USC aren't aware that i know is how jim's tendency of

cholangitis attacks provoking weird ct-scan results can also mean jim's

lymph nodes also appearing weird. it's not that they are necessarily wrong

to assume jim's lymph nodes have been compromised; it's just that we believe

they are not fully factoring in how truly ill jim was at the time of the

ct-scan. this is born out by bloodwork USC did at their evaluation, and the

fact that jim was hospitalized just the following sunday, three days after

that particularly rough bout with cholangitis for which he is still on meds.

yet being no member of the monogrammed white-coat club, i can't very well

announce to anyone @ USC that i know what i'm talking about; it's okay, USC

is proceeding the way they truly feel they must; their protocol is careful

and slow in part because they don't have all the puzzle pieces. all this

does is add to our wait (which adds to jim's risk) as well as our overall

frustration... but hey, what's a little more frustration when we've come

this far? God truly is present in all the details, He has been faithful and

good, and He's NOT going to abandon us. :-)

i must be experiencing a little emotional shellshock at this point, though.

this last week has been especially draining; for the past two days

especially, i had to work pretty hard to grease this whole ugly mess of a

ball in an attempt to keep things rolling, but hey, it's what i do best

(seems i didn't get a degree in organizational leadership for nothing!).

i'm also concurrently working on many other things, including getting our

family vaccinated *early* against the flu. for those of you who want to

join us at this flushot party, we'll be in a queue at the sav-on in solana

beach, california, sometime between 4 and 7pm, today! criminy, i'd keel

over from total shock if any of you actually showed up! :-)

to recap, i'm praying the highly-respected big-gun diagnostician they are

pulling in for tomorrow's meeting (who will essentially decide jim's fate,

as far as USC is concerned) will recommend an MRI; i'm praying the two

hepatologists will connect by phone in time to benefit jim's case... this

will better empower the new hep to go to bat for jim at the big meeting; i'm

praying if an MRI is recommended, this will be quickly approved by

insurance; i'm praying for swift notification of the outcome of the meeting

(the worse jim physically feels, the more exasperated we become regarding

the wait); and i'm praying USC will agree to pull in jason (or any other

donor) for a speedy evaluation. is that too much to ask of God?

naaaaahhh -- i don't think so! actually, you already know i am praying for

a december-january surgery date, too. :-)

and there you have the " latest " update on jim! (once again, my apologies

for the length of the post)

sending you all our love, and thank you for your incredible support. you

all have been awesome, and we have truly *felt* every prayer.

maureen

p.s. kelly, i keep lookin' in my mailbox... what's up with that? everyone

else's posts had me dying with curiosity... should i stop checking? (hint,

hint) :-) p.s.p.s. andi, you should be receiving those ensures in the

mail... jim and i made it to the post office yesterday and sent via regular

mail. drink 'em in good health... in fact, hoist 'em up in a toast to

your's AND jim's good health! :-)