Head ’em up. Move ’em out. Oh, wait a minute…

This post is a continuation of our experiences since the end of March.  The posts in chronological order can be found on the Timeline page.

I’ve read that all human beings fall into one of two categories when it comes to facing a crisis – those who are gripped by fright and those who fight.  Our very basic human nature kicks in and we are either paralyzed by fear and eaten by the monster we stand before, or we jump to action and fight as long and as hard as possible hoping to prevail.

Following the news from the doctor on May 12 that Francis was facing a battle with cancer, my husband started his fight. He caught his breath after the shock of the diagnosis and started making phone calls.

After informing family of the diagnosis, we focused on our options for treatment.  We narrowed our options to staying put in Tallahassee for the surgery and subsequent follow-up treatment or trying to have the surgery done at Mayo Clinic in Jacksonville, where much of Francis’ family lives.

This decision had to be made quickly, and that thought was terrifying.  What would happen if we made the wrong decision?

Surgery was tentatively scheduled in Tallahassee for Tuesday.  If we made the call to go to Mayo but couldn’t get in, we were likely delaying the surgery in Tallahassee by more than a day.  Francis already wasn’t eating, and continuing to go without food for much more time obviously wasn’t an option.  On the other hand, going to Mayo also meant a delay in surgery, possibly several days if they chose to repeat some of the testing done in Tallahassee.

We weighed these questions and concerns through the night Saturday and much of the next day.  My mom arrived Sunday to help us care for Couper while we dealt with the cancer diagnosis and the decisions about treatment.

Dr. Eliot Sieloff, the doctor who would perform the surgery if we stayed in Tallahassee, came to see us on Sunday morning (May 13) and spent a good deal of time with us patiently answering questions.  Francis mentioned our possible interest in a transfer to Mayo Clinic. Dr. Seiloff was sympathetic and understanding.  He didn’t allow his ego to trump Francis’ wishes for a second opinion.  We found this concern for our wishes was not the case with other doctors we encountered at TMH.  As a matter of fact, one doctor even tried to talk us out of having the surgery performed anywhere but Tallahassee, implying it was a waste of time to go to Mayo.

After the visit from Dr. Sieloff we were leaning toward Mayo, but had not yet made up our minds completely.  Regardless of our final decision, we felt completely confident that Francis was in good hands if we stayed in Tallahassee for the surgery with Dr. Sieloff.

During our discussions later that afternoon, we felt we needed to ask a few more questions.  We asked the nurse to page Dr. Sieloff.  She seemed skeptical that we’d hear back on a Sunday afternoon, especially since he was no longer in the hospital.  He called Francis in less than an hour.  He again patiently answered our questions and informed us that if we settled on going to Mayo, he would do everything he could to help us get there.

Later that evening, I posed the following question to Francis:

If we stayed in Tallahassee and the surgery was performed in Tallahassee, is there a chance that you may later regret not going to Mayo Clinic?  Likewise, if we go to Mayo Clinic will you have any regrets that you didn’t stay in Tallahassee?

After looking at it this way, we were able to be at peace with our decision.  We were going to do everything we could to get Francis into Mayo Clinic.

This decision posed a whole new set of challenges.  First, it is very difficult to get an appointment at Mayo if you aren’t an established patient.  It was probably a long-shot to get in quickly, a necessity for Francis. Second, we were just 15 days away from our second child’s estimated due date so we needed to prepare for Baby Gibbs to arrive in Jacksonville.

The only thing we knew to do was to reach out to friends and extended family for help.  Francis’ dad was an established patient at Mayo and would reach out to his oncologist when the office opened Monday morning.  Francis’ brother, Robert, talked to his neighbor who was a hospital administrator at Mayo.  Friends like Scott Henderson and Eric Eikenberg immediately began calling contacts and friends with connections to Mayo.

To this day, we’re still unsure just how many people were making calls and working behind the scenes on our behalf.  Thanks to their efforts by Monday morning (May 14), Francis was informed that things were already in the works to get him a bed and at Mayo.

I’ll pause here to express that we are still so touched by those who helped us in the effort to get Francis to Mayo.  I’m amazed that people who had never met Francis (and possibly had never heard of him) were willing to reach out on his behalf.  It’s clear to us that so many people love and care for Francis and our family.  We can’t possibly do enough to thank all those who helped us get to this point, but know that we continue to remember your kindness and stand ready to return the effort should you need anything from us in the future.

Now that the wheels were in motion, we were hopeful for quick action, but the day proved to be extremely frustrating.  Francis called Mayo first thing to let them know that we had done the necessary registration online, to get the name of the person responsible for hospital transfers to give to the case worker at Tallahassee Memorial Hospital (TMH), and to see if there was anything else we could do to speed along the process.  All the people that were making calls on his behalf and even a few employees at Mayo were equally as busy that morning.

The caseworker from TMH started the paperwork and the doctors there were all on board.  Then we waited.  If you know Francis and me, you may know that we’re rather impatient when it comes to bureaucracy.  I suppose that’s part of the reason we went to DC – to do what we could to improve and push back against government bureaucracy.  Hospitals aren’t much better, and may actually be worse.

By mid-day, TMH informed us that the transfer was good to go.  They were just waiting for transport.  Francis would have to ride in an ambulance to Mayo.  Francis and I discussed how absurd this was.  He was possibly the healthiest person on the whole floor, hospital staff included.  He was hoping they would let him sit shotgun in the cab of the ambulance and operate the lights and siren.

We decided that I should go home and pack things up, get both our cars loaded for what we expected to be at least two weeks away.  Then, my mom and I would caravan to Jacksonville and get checked into the Inn at Mayo Clinic (a Marriott Residence Inn type hotel with two-bedroom units and full kitchens) to await Francis’ arrival by ambulance.  I left Francis to pace the hospital floor doing what he could to urge the bureaucratic wheels to move.

My mom and I had just finished loading the cars and were ready to get on our way when Francis called.  He said to wait, there was a problem getting a bed at Mayo.  He assured me that he would give me a call as soon as he had more information.  We took the opportunity to give Couper a nap, and I plopped down on the couch to rest while I waited for news.

I received a call about an hour later, and it was not the news for which I was hoping.  Francis asked me to get back to TMH as quickly as I could.  It sounded like we wouldn’t be headed to Jacksonville after all.  I didn’t understand what had happened, and he was extremely irritated.

I got back to the hospital and met Francis by the nurses’ station.  He was on the phone and clearly unhappy with someone.  He was angrily pacing the hallway trying to get answers.

Apparently due to the slowness of the bureaucratic hospital process, there was no longer a bed available at Mayo for Francis.  Furthermore, it appeared that they couldn’t guarantee a bed for the next day either.  This is not what we had been told by some of the people working behind the scenes, and we were exasperated.  It was nearing 5:00 p.m., and the closure of the business offices at both TMH and Mayo.  Clearly there was a communication problem somewhere, frustrating to us and to our contacts at Mayo.

As consolation, Francis was given an appointment for a consultation with a doctor at Mayo on Wednesday, May 16.  That didn’t necessarily mean he would be admitted to the hospital.  He would need to call to confirm the appointment for Wednesday afternoon – they were holding it for him – but the business day had concluded in the meantime and the scheduling office was now closed.

TMH was clearly eager to wash their hands of Francis, and happy to see him go after the activities of the day.  He was discharged to go home in time for dinner.

We were also keen to leave TMH, but we were worried that Tuesday could be just as frustrating a day.

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One response

  1. Oh how this brings back memories of dealing with all the “red tape” of getting the care we knew that Mike needed. Keep up the good fight…we understand and are keeping the prayers pouring on your behalf! I am sure it was the prayers of our family and friends that gave us strength, courage, stamina, and wisdom to pursue the path we felt God was leading us on. God is on our side! He is on YOUR side!

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