Latest job title: cancer concierge

It seems that just like before, we ended up at Tallahassee Memorial Hospital (TMH), when we didn’t want to be here, over a weekend when we couldn’t reach anyone who could help us get somewhere else.

We would like to be at MD Anderson Cancer Center for treatment rather than TMH.  Because Francis has such a rare and unusual type of cancer, we seem to be spending more time giving information about Francis’s cancer to the doctors rather than getting much information from them about his status.

It isn’t very comforting when you don’t know what to do for Francis and the doctors don’t know enough to quit telling us that the edema in his intestines is from the Crohn’s disease.  Let me be clear.  It isn’t Crohn’s, and it’s more likely thickening of the bowels from tumors rather than edema.  But what do I know, I’m just the wife.

Back to the update…first and foremost, Francis is comfortable.  He’s even snoring right now.  I want to block the door so no one interrupts this much needed rest.

We have a couple of things in the works at the moment.  Now that it’s Monday, I’ve spent a LOT of time on the phone and email.

I’ve talked to Karen, the PA for Francis’s surgeon at MD Anderson, Dr. Keith Fournier.  Karen is awesome, awesome, awesome.  I knew these people existed in the medical community because there are several in our family.  They must be akin to finding four-leaf clovers.  Thankfully, Karen is one of those elusive four-leaf clovers and she happens to take my calls and emails.  Woohoo!

Karen is in the loop and will speak with Dr. Fournier about what is going on with Francis.  She is also having me overnight a CD of the CT Scan done on Francis yesterday afternoon.  She wants Dr. Fournier to personally see the scan so he can compare it to the scan done on our first trip to MD Anderson in early December.  Then we can operate with as much information as possible.

Second, we’ve been working with a helpful resident who is willing to facilitate a transfer to MD Anderson if and when they say they’ll accept Francis.  She’s gotten all the phone numbers and contact information for the surgical team in Houston, and came in at 7:00 this morning to let us know she would be working on that when she left the room this morning.

Yesterday I mentioned some specific hopes and goals.  Here is where we stand with those and a few new ones:

1.) Blockage to disappear or diminish – no known change.  Keep the prayers coming on this one.

2.) Pain is controlled and Francis is comfortable – so far so good.  Last night was a better night.  Hopeful this continues.

3.) Hiccups go away and stay away – not staying away, but not as frequent or as prolonged when he does have them.  They continue to be irritating and just now interrupted his sleep.  Can’t block the door on that one.

4.) Rest for Francis – limited interruptions would help, but it seems like there’s a conspiracy to interrupt just as he’s gotten to sleep.  Hoping for a quiet afternoon when it comes to medical team arrivals and departures in his room.

5.) Safe travels for my mom – she made it safe and sound and Couper and Riley are currently mid-spoiling.  Thanks to Tom for picking up and safely delivering my mom to our home from the airport.

6.) Wisdom and cooperation for the doctors and medical staff as they treat Francis – a work in progress.  I should have added patience for us as we answer the same questions or correct the same details over and over again.

7.) Grease for the bureaucratic wheels – NEW.  Seems like it takes a long time for TMH to talk with whomever we request they consult with on the case/transfer/etc. Hoping that calls to doctors, CD creation and sending, calls to transfer office all get through on the first try and are resolved in a speedy fashion.

8.) Patience for both of us – NEW.  Should have mentioned this already as well.  We hate waiting (as I’m sure many of you do), so when that’s the only option we have at the moment we don’t take it too well.  Thank goodness for TV, online crossword puzzles, and nap opportunities, but what we really want is progress of some sort on the part of the hospitals and medical teams in both locations and marked steps toward healing for Francis.


8 responses

  1. Thank You for the update. I am always praying and hoping for the best.

  2. Leanne, you are terrific! Your strength is a positive for all of us! Hope to meet you (and Francis) someday after the “smoke clears”.

  3. Without a doubt, you are the most effective and masterful cancer concierge on the planet. Praying for numbers 1 through 8 and then some — and always on standby if we can help in any way. xx

  4. Thank you for the update LeAnne. I pray MD Anderson accepts his transfer immediately!

  5. Leanne, praying for you and Francis, Love Aunt Bev

  6. I pray each day for both of you and your family. Love, Aunt Sis

  7. I can see your frustration and am inspired by your strength. We are praying for 1-8 and for TMH to utilize some common sense and for there to be quick cooperation between the two hospitals to help in Francis’ healing.

  8. LeAnne- I’ve been keeping up to date on Francis and you thanks to Frances Taber. I’m Bo Taber’s niece, and I want to add my support to that of your friends and family below. You’re obviously doing heroic work – both of you – workying to fight this unusual cancer while taking determined small steps forward towards his comfort and healing. You’re both in my thoughts and prayers, as is your mother. It’s wonderful that she can be there with your chidren, and I hope she’s strong for that job too. I hope you’re beginning to get the care you need for Francis and that the hospital transfer can happen soon. Francy Taber

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