update on jim

[Guest guest]

hey gang, i need to finish up a few private e-mails to some individual group members -- but 'til then...

....jim & i are breathing a sigh of relief, finally, as we've finished up w/all his various doctor appts, for the time being. we've returned from a weekend w/the (LA county) kids, which shortened our commute to USC, for labs & clinic & immunosuppressant re-assessment fri a.m. it was a very, very important appt. that went extremely well. got one of the NICEST possible docs in clinic rotation, dr. donovan, a sweetheart of a guy ("mom peg" in our group used to love him when he saw her phil over at kaiser).

our time at clinic confirmed my suspicion that USC was *not* following jim closely enough (not for my comfort... nor the doctor's). i do believe jim slipped through USC's cracks since last fall, and that may well have been due to lack of follow-through on the part of one particular tx coordinator... but there's no sense "blaming" her. she happens to juggle the overseeing of 286 USC transplantees... and me, i only oversee one (jim!). i'm not making excuses for her obvious lapse (jim should have been seen by USC at the onset of his first melanoma... i suspected this, i told jim as much, but when jim faxed up his pathology report last fall, all they did was file away the papers).

now jim realizes the best person to make sure jim sees certain doctors at certain times for certain procedures is... me.

jim, ever the workaholic, was a bit too comfy fax-ing lab results up to his tx center, and since his labs have always been perfect, jim thought there was no need for any on-site follow-up. with jim right there listening, i asked dr. donovon how frequently he thought jim should be seen by USC, given the development of the skin cancers post-tx. the answer was every two months. so from here on out, i will make sure jim makes and keeps his appts.

the 2nd opinion pathology report actually indicated the presence of some (albeit slight... but nevertheless some) immune system (which really shocked the oncologist). but great news -- jim does *not* require surgery at this time, to go after any rogue cancer. it is believed there is a less than 10% chance that this most recent invasive malignant melanoma of jim's will return. jim continues to be concerned re a sense of "fullness" with the nodes in his left armpit, but i had both the oncologist *and* USC check him out, and they couldn't find a thing. jim will have a baseline pet-scan done very soon... we'll also be continuing w/close follow up of jim seeing his oncologist/melanoma specialist every 12 weeks, the dermatologist every 8 weeks, the hepatologist (for colonoscopy) every 24 weeks, USC every 8 weeks.

USC took jim off *ALL* prednisone (woo hoo!), effective immediately. jim's labs were repeated, and will be repeated again in 2 weeks. on the basis of those results (assuming they are good results), we will push the immunosuppressive envelope and start reducing jim's prograf. hopefully. the hopeful intent: lesser intensities and frequencies of skin cancers. if jim proves even *s-l-i-g-h-t-l-y* chimeric (it remains to be seen, but this is my hope), then we'll keep pushing that envelope, ever so slightly. the trick will be not pushing it so much that we encourage a rejection episode w/our son's donated liver.

great picture of your sweet baby, colleen! super good to have you unlurk, steve & omaha tim & kath. terri, good to have you back home (literally & figuratively, here in the group) & how marvelous that you had a terrific time on holiday! welcome to new support group members... gosh, there seems like so many new members chatting away, sometimes, that i feel a little out of place. deb & shauna, i'll be writing you both asap.

and now for some REALLY SOOPER-DOOPER NEWS -- jim & i are gonna be (1st time) grandparents! jillian & aaron out in arizona are expecting in the spring. it's a double-whammy "surprise" but profound blessing. and just think -- 3 years ago, jim would never have thought he'd live to see grandchildren, much less walk his two daughters down the aisle at their weddings. God is so good!!!!! (He always is!!!)

at 49, i'm too young for a senior citizen discount... so it seems strange, the concept that jim & i will be grandparents. ok, here's an odd PSC-group poll: what are some of the possible names for grandma? i know i don't care for granny, grandma, grandmother or nana. perhaps i should wait to see what names the baby comes up with for jim & yours truly... but 'til then, let's see... short of asking our group member gary o'brien, i think there are 2 types of names for grandparents, more formal & less formal (more or less corresponding to the english 'grandmother' vs. 'granny.'). formal is: grandmother -- seanmháthair (SHAN-maw-hir). i dunno... it literally means 'old mother' ... and excuse me, but that's not me! hee hee! less formally, there are the equivalents of granny & grampa: granny -- mamó (MA-moe, moe rhymes with so); grandpa -- daideó (DA-doe, doe rhymes with so. even though it looks like some ultra cool, beatnik "daddy-o" ...ha ha!). and since the gaelic for maureen is móirín (pronounced the same), i could be mamó móirín... but the poor grandbaby would be tongue twisted!

anyhoo, you g-parents in the group, what do your grandchildren call you?

love,

maureen