Today’s Nail biter

Yesterday MD Anderson refused Maggie’s treatment.  Apparently for the second time this week a liver enzyme has been out of whack causing some concern.  She’ll return on Monday (without Angel Flights – another story) for another test and, if her enzyme hasn’t righted itself then we’ll likely be kicked out of this study.

Gamma-glutamyltransferase, or GGT, is a liver enzyme somehow associated with the secretion and absorption of bile.  Normal measurements in folks like you and me should be around 8 – 90.  Maggie’s rang in at a whopping 1121.  There’s definitely some cause for concern because an elevated GGT is associated with liver mechanisms not working right.  And that’s a scary, scary prospect.  Scary enough to the doctors to drop Maggie from this trial.

Monday she’ll be tested again and if the levels are still high, will be kicked from the trial.  Thus, this weekend, no Tylenol or alcohol of any sorts (both can cause elevated GGT levels) plus lots and lots of water to flush out the system.

Our trips Monday (and the those the rest of that week, if we still have them) won’t be with Angel Flights.  When I called yesterday to confirm her flights I was informed that they have no upcoming flights in the system for her.  Come to find out that MD Anderson had failed to send over the requests for assistance and now it’s too late.  Also come to find out, MD Anderson blames us for that.  Bureaucracy, it turns out, got us this time around.

Here are the rules for Angel Flight assistance that we’ve just learned:
*  A maximum of two flights a week are allowed
*  MD Anderson needs at least two days processing time for a request for Angel Flights
*  Angel Flights need five to seven business days processing time

Apparently the process for each flight is as follows:
1.  We notify social worker #1 (SW1) of need for transportation for a specific day
2.  SW1 fills out application
3.  SW1 requests letter from physician stating that it’s medically safe for Maggie to fly
4.  Application is then given to another social worker (SW2)
5.  SW2 faxes application to Angel Flights
6.  Angel Flights posts travel request on their web site
7.  Pilots volunteer for the specific flight day
8.  Angel Flights notifies Maggie of pending flight
9.  Pilot contacts Maggie directly to arrange specific time and place
10.  Maggie gets on the plane

Backing all that up, we need to notify the social worker at MD Anderson seven to nine business days in advance to get the best shot of having a flight available to us.  I suppose that’s all very reasonable.  I could quibble over a few of the details, like not being able to bulk-process multiple flight requests or requiring a doctor’s statement for each flight, but it’s still a pretty amazing service they provide.

Hopefully, by posting what we’ve learned, someone can benefit from this knowledge.

In other news, Maggie’s relatively-new side pain bothered her all night last night making for not much rest for the Weaver Family.  Her nausea has been happily absent over the last couple of days until last night when we re-acquainted ourselves with her falafel.  Maggie says that falafel redux isn’t very pleasant.  I was just thankful she didn’t have any of my jalapeno-coated pizza.  (Yes, we went to Alamo Draft House for dinner.)  It was extremely sudden and completely unexpected.  It’s so strange how that happens.  After she was done she felt fine we replaced the now-gone falafel with a veggie corn dog.

Yesterday, after her treatment was canceled, we used a combination of gifts from you and a voucher to get Maggie back home so we could be together.  Thank you again for the gifts.  Maggie and I held hands and kissed in your honor.  Nothing gross, now.  Just as a thankfulness/tribute thing, you dirty-minded goat, you.  Thank you.

6 thoughts on “Today’s Nail biter

  1. Push Smart Water and warm green tea, both will help to flush the system.

    Hang in there, each day she kisses you, Chris, is another victory.

    Much Love

  2. Perhaps a hospital administrator will better understand how weak logistics can add avoidable & truly costly burdens to all his concerns. Such epiphanies are harder to rationalize away once pointed out as true and clear of the fog of so personal a cancer battle.

    Please know that each morning before you wake this family on the east coast has already held you & yours in their prayers.

    Hold Fast and follow Mom’s advice.
    Don MacLeod

  3. Angel Flight is a great concept, but sounds like they can be more user friendly 🙂 You two have been on our minds and in our prayers… Let me know if you guys need anything at all. Keep making lemonade out of these lemons
    Love Leann & David

  4. MD Anderson is great but GAW! I have heard waaaaay too many issues likes yours. (I used to work at LLS). I think of you Maggie everyday and admire you (ask Flo). Thanks for the detailed updates. God Speed!

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