As you may know, we didn’t get the news we were expecting from the surgery. The easiest way for me to explain is to walk you through our day on Wednesday.
Francis was rolled back for surgery at 8:00. We knew there would be prep for the actual procedure by a urology team and some additional IV lines placed by the anesthesia team that would happen after Francis was under but before the big cut.
I was told to expect an update from the nurse every two hours on the even hours of the day.
At 10:00 a.m., I got the first update from the nurse. She told me that the incision happened at 9:05, and that Francis was stable and his vital signs all looked great. I asked if they had decided to move forward with the procedure as planned, and she repeated just what she told me. So much for information.
I sat in the surgery waiting room working a 1000 piece jigsaw puzzle. Having 12-18 hours of waiting to burn, I figured I could make a significant dent in the puzzle during those hours. Francis’s dad and stepmom waited there with me, and planned to attend updates with me.
At a little after 11:00, the volunteer manning the waiting area approached me to let me know that the surgeon was here and would like to speak to me. I immediately felt like throwing up, and walked to the consultation room.
Dr. Keith Fournier was there in his white coat with his briefcase, I think my brain began to process that this was unusual before I truly realized what was happening. He told me that his part of the surgery was complete.
As I understand it, and we’ve since had it clarified, the surgeon was unable to do much of anything other than place a G-tube to replace the function of the NG tube for Francis.
He described that the cancer that was present when viewing the inside of Francis’s abdomen during the laproscopic procedure in December had grown and spread. Additionally, he informed us that the tumor was covering the mesentery, colon and lower third of Francis’s pelvis and the organs in that area.
Dr. Fournier explained that to remove all the organs and tissue associated with the tumor would have so severely impacted Francis’s quality of life that it wouldn’t have been worthwhile.
What we believed was an intestinal obstruction wasn’t exactly as it seemed either. Francis and I had wondered all long where the apparent blockage was located. When the original surgery happened at Mayo Clinic, we believed that the obstruction was addressed and wouldn’t be a problem again.
In a way, we were correct about the repaired obstruction. The mesentery holds blood vessels, lymph vessels, and nerves. The infiltration of the tumor through the mesentery was the cause of the “obstruction.” In fact, no part of the bowel was truly obstructed.
Dr. Fournier pointed out that upon watching the bowel during surgery you can actually observe intestinal peristalsis. In Francis’s case, too much of his intestines were affected by the tumor disruption through the mesentery. As a result, much of Francis’s intestines weren’t operating at all.
Ultimately, this is a devastating prognosis. Francis will be unable to consume food by mouth. He’ll be limited to a small amount of oral fluid consumption. He likely will be unable to pass stool or gas.
At this point, we understand that Francis will continue with the TPN (total parenteral nutrition) through a PICC line in this left bicep. Because Francis has limited intestinal function, chemo isn’t an option either.
So now, where does that leave us? Good question. These are some of the things we’re still trying to work out. What we do know is that to do nothing only gives us months of time together.
You have been so generous with your words of kindness, prayers, cards, texts, emails, and support. We will continue to request your prayers for us, Couper, Riley, and our families. I wish I were able to respond to each of you individually, but I’m sure you will understand that it may take me some time to do so. Either way, we remain grateful and completely humbled by such a tremendous outpouring of love.
We face some difficult conversations and painful decisions in the days and weeks ahead. As we begin to wrap our heads around what we must do and more immediately how we get Francis out of the hospital and back home, I will do my best to keep everyone up to speed through the blog. I appreciate your continued patience as we ease back into life with this new reality before us.
Family, friends, and those who are supporting and praying for us whom we’ve not had the pleasure to meet:
Francis is through the surgery and now recovering in his hospital room. We have gotten some unexpected news, and need some time to digest what we’ve been told and make some decisions.
The anesthesia will wear off over the next 12-18 hours, so I won’t really be able to discuss anything with Francis until that time.
I simply ask that you hold us in your thoughts and prayers as we process what we’ve been told today and start to work through the information and what it means for our family.
With warmest regards,
We got our surgery wake-up call this morning at about 5:30 a.m. (CST). I decided to stay overnight in Francis’s room so that I would be sure I was here when they took him down to prepare for surgery.
When the nurse notified us that “they” were on the way to get Francis, we changed out of our jammies and gathered up the rest of the loose belongings from Francis’s room. At about 6:00 a.m., we were headed to the surgical holding area.
The check-in nurses in the holding area informed us that the operating room was scheduled for 8:00 a.m. (Yay, more waiting!) The consent forms were checked, the anesthesia team arrived to start fluids and talk about their role, and we did our final hug and kiss.
At 7:50 a.m., Francis got some happy juice (valium) in his IV and they rolled him through the double doors.
We were told that the procedure would last until about midnight tonight (again, central time). I will post updates periodically throughout the day as I am given information by the nurses.
We can feel all the prayers and thoughts, and cherish each and every one. Stay tuned…
Medical staff with the air ambulance service and the EMTs with Leon County EMS arrived at Francis’s hospital room around 2:45 on Wednesday afternoon. At 3:15 p.m., Francis was sitting up all secured on a gurney in the airplane, the doors were closed and engines fired up. The weather we were flying into wasn’t the greatest, but overall we were expecting to be in the air for around 2.5 hours.
The one thing that was unknown was how the flight would make Francis feel. When your abdomen is distended with gas and fluid the pressure change from high altitude, even with a pressurized cabin, could cause some problems.
About an hour into the flight, Francis began to feel uncomfortable. He requested that the medical staff plug the NG tube, which wasn’t removed prior to the transport, into the suction on the plane. Another consideration of flying is that the suction on the airplane isn’t as strong as hospital suction.
With mediocre suction and the painful pressure from the altitude, we were anxious to have the flight finished. Unfortunately, the weather didn’t cooperate so well. We circled all the way around the airport to get the best path through the storm to the runway below.
After a rather bumpy ride, we landed safe and sound at William P. Hobby Airport around 4:30 p.m. local time. The ambulance met us plane side and we got on the road to MD Anderson.
Now, for those of you who haven’t driven around Houston, the traffic is horrible. Friends in the DC area can understand this well. A trip from the airport to MD Anderson could take 30 minutes or it could take two hours.
The weather and a stalled car in the middle of the highway weren’t going to help our return. The driver of the ambulance informed me that we would likely be to MD Anderson in two hours. Yikes!
As an aside, along the way on this cancer journey we’ve met a lot of interesting and inspiring people. The driver of the ambulance is one of them. He served in the Marine Corps and lived in the Washington, DC, metro region for a number of years. We bonded over bad traffic. He shared that he has a two-year-old son (just a few months younger than Couper). When his son was only six months old, they discovered that he had cancer. He was treated in Houston, and is cancer free today. I love hearing these stories!
Fortunately, our two hour drive was only 45 minutes. The trip from the ambulance bay through the maze of hospital hallways took nearly as long.
Francis settled into his hospital room at about 6:15 p.m. What followed was a well-oiled machine of hospital admission. In what felt like no time at all, Francis was in a gown, IV and fluids started, doctor in and out, and NG tube plugged into suction.
I escaped downstairs to the cafeteria and grabbed a bite to eat before returning to the hospital room to settle into my cot for the night.
That night I think Francis and I had the first night of restful sleep (despite the 5:00 a.m. check-in by the nurse) since this ordeal began 13 days earlier.
Since settling in here, Francis has been seen by his surgeon (Dr. Fournier), his dietitian, the surgical fellow for Dr. Fournier, and the plastic surgery fellow. Next week we’ll visit with more doctors who will be present for the surgery on Wednesday. Around here they refer to it as the “Mother of All Surgeries.” The more we hear from these doctors the more appropriate that title seems.
Everything is now falling into place as we look forward hopefully and anxiously to the big cut on Wednesday (2/13).
For those of you who have asked what we need and what our goals are, here are a few things. We both need rest because next week will be exhausting both physically and emotionally. We need attention to detail as the doctors and nurses begin to prepare us for the surgery and the recovery with an abundance of information. Francis needs to continue to build strength and health with the help of the TPN (total parenteral nutrition) and walks around the hospital.
I will be sure to keep everyone updated on Wednesday, and if anything new comes up in the meantime. I cannot thank you enough for your continued thoughts, prayers, and support.
We have big news! We’re headed to Houston today. Francis and I decided that the best thing we could do last Friday morning was go ahead and make the transfer to MD Anderson Cancer Center (MDA) in Houston, Texas.
Doctors and medical staff at Tallahassee Memorial Hospital (TMH) were putting pressure on Francis to have a new IV line placed, and we didn’t feel comfortable with the speed with which they were moving. Francis also wasn’t fond of being stuck, and especially when he was a little concerned with the potential of the sticking being redone once he arrives at MDA if they wanted it done differently.
Paperwork started being written and processed on Friday (2/1). We knew things weren’t likely to move quickly because Karen Beaty (Dr. Keith Fournier’s PA), informed us that MDA’s hospital was at capacity with patients needing beds. A transfer was unlikely before Saturday or Sunday.
If you aren’t familiar with the hospital transfer process, it goes something like this…
The doctor here contacted the surgeon there to confirm he was willing to accept Francis.
After doctors speak, the doctor here tells the caseworker here to process the transfer. The caseworker speaks to the hospital there, faxes them paperwork and faxes paperwork to the transfer center at TMH. (Seems like we could find something more efficient, not to mention clearer for reading purposes, than fax machines. Wait a minute…didn’t we invent something called the internet?)
Then, the transfer center at TMH connects with the transfer center at MDA. Once a bed becomes available, MDA lets the transfer center at TMH know and the nurses on our floor get the call to finalize details and get Francis prepped.
We waited through the weekend, and found out Monday morning that MDA only had capacity to take emergency cases through the weekend.
Francis doesn’t qualify as an emergency patient because he’s stable and his symptoms and side effects of the intestinal obstruction are fairly easily managed. This is something for which we’re very grateful, but thoroughly unhelpful in speeding up the transfer process.
I stayed in email contact with Karen through the weekend and early this week. She told us Monday evening that Dr. Fournier was in contact with the transfer center at MDA to try and have Francis moved there in a day or two. Today is day two.
Very shortly, we expect to be transported to Tallahassee Regional Airport for an air ambulance transport to MDA in Houston. We have to be there by 5:00 p.m. Central Time for Francis’s bed reservation.
We aren’t sure what the rest of the day holds for us once we arrive in Houston, but we know we’ll be one step closer to Francis’s healing.
Surgery happens one week from today, so stay tuned for updates as we prepare for a long day on February 13 and the recovery that follows.
If you’d like to send mail to Francis in Houston, you can send it to
1333 Old Spanish Trail, #3127
Houston, TX 77054