posted on CarePages Feb 23, 2011

“Faith is an island in the setting sun, But proof is the bottom line for everyone.”
Paul Simon

So, back to the business of beating leukemia. As elated and thankful as we were leaving ICU for Brennan’s old room (number #9, for you Beatles fans) our arrival was heralded with guarded fanfare. Everyone, and I mean everyone, from the janitorial staff to each and every nurse on the transplant unit was thrilled and relieved to see him back on the floor. As strained and miserable as he felt and appeared as his bed rolled down the hallways, no one really noticed the pain and the tears. It was all about the goodness of it all.

I had been with him for his last night at ICU. With him so fresh off of the ventilator, Tara and I made sure that each night was spent with one of us 100% in the room with him. While intubated, and with around-the-clock nursing care in ICU, we were allowed the luxury of sleeping at least part of the night in the “parent room,” one of which is provided for every patient, and is almost necessary given the constant and frenetic activity in ICU.

Although the nursing care was no less attentive once off of the vent, it was our intent to ensure Brennan that we have been and will be there for him every moment. I am certain that it was equally as important for us to simply hold his hand and help him whenever he asked; but for the last few nights we stuck it out with whatever sleep we could conjure form the recliner next to his bed.

Knowing about the often wearisome disorientation and ticklish issues associated with ICU psychosis (it can be shocking and significantly disorienting for people who have been dependent upon a ventilator for any extended period of time), we both wanted to make sure that he never felt alone. As it turned out, he snapped back into his regular old self with more alacrity that I do on a normal morning. Any feared psychiatric side-effects of ICU never approached the radar screen; but other issues started creeping in.

The main issue lingering, from even before the event, was the hemorrhagic cystitis, representing the clot remaining from his ruptured bladder which occurred just after Christmas. ICU proved helpful in treating this condition, allowing a more humane insertion of a catheter for the purpose of irrigating the bladder and, ultimately evacuating the blood clot. This is critical, as bladder outlet obstruction from clots can lead to urosepsis, bladder rupture, and renal failure. Brennan was having bladder spasms as a result of the cystitis; and to urinate, even with a catheter, became extraordinarily painful for him.

Secondly, beginning on or about the day of extubation, Brennan’s diarrhea started increasing in regularity and changing dramatically in its appearance. With the catheter installed, the only way to cover him has been with a conventional diaper, which provided to offer the most expeditious means of getting a bed pan under when he felt a wave coming on.

Getting up to the bathroom was virtually out of the question once he was awake in ICU. he was too weak, nor was there time. He had become so emaciated and weak that even picking his head up had become a chore. Therefore, with he help of a nurse, or if someone else was in the room helping you, we did our best to tag-team him; one holding up his little bottom while the other cleaned.

The experience for us was not as bad as it sounds. Indeed, Tara and I were delighted to have an alert little boy to clean, not knowing a week prior if he would ever get off the vent. But for him, it was excruciating. Excruciatingly painful, and excruciatingly exhausting. The simple act of trying to hold up his hips throughout the bed-pan exercise was more than he could handle.

And the diarrhea persisted. We were told initially that it was simply a lingering symptom of the engraphment syndrome. Having had an ANC over 11,000 for a couple of days, and a white blood count throughout he room, we knew that the RPM’s on his little engine were grinding out on the top end but would eventually settle down.

On Monday afternoon, he was clear of all of his external IV’s, with the exception of his central line (of course) and cleared for readmission to his old room at the bone marrow transplant floor. Tara’s mom, Susan, was here last week through Wednesday, with my mom tag-teaming through the weekend once she left. So when he was actually moved to the room, Tara and I slipped out to a little corner dive called Westy’s to have a valentines dinner with the boys before I returned to stay with Brenny.

I had actually forgotten about valentines by that time, or at least did not expect a crowd of lovers at Westy’s, which is a little corner pub with great food on the north end of downtown. But when we arrived, there were dozens of horse and carriages all around, and every chair was full. Couples and families from all over had made the trip to “the North End” to take advantage of a dinner special which included a romantic carriage ride, which. Not exactly the most romantic spot in Memphis, Tara, the boys and I had fun speculating about the nature of those around us.

But with the crowd came the wait. And the wait. Before the food even arrived, my head was dropping. The sleep deprivation from the previous night in ICU was upon me and I was literally watching the second hand tick by on their clock, praying to eat so that I could get back to Brennan’s room, hopefully for some sleep.

Saying goodnight to Tara and the Brothers, we all bid adieu with hopeful enthusiasm. Brenny was finally back in a normal room for the first time in many many days. But what hoped to be the first night of at least a little more rest erupted into the night of bladder spasms on top of a brutal diarrhea and nausea marathon. Things were so out of control that twice we had to change Brennan’s entire bedroll. I remember standing in groggy silence, holding a naked shivering Brennan in my arms, crying in pain. His boney knees literally knocked one another while the nigh nurses scrambled to get clean sheets and pillows so that he could be comfortable for at least a little while longer.

I think we both finally fell asleep around 5 or 6. I woke to learn that doctors, PA’s and nurses had all visited the room to talk with me around 8, but could not roust me from my fitful slumber. Finally, close to 10:00 I awoke to find one of Brennan’s favorite nurses, Miranda standing over his bed, sorting through the tangle of lines from a night in and out of the bed. Brenny woke to to a sudden urge for the bedpan, the contents of which must be measured and weighed. I learned that he produced two liters of diarrhea that night, enough to raise the eyebrows of the BMT staff to begin considering that it may be more than the remnants of engraphment syndrome. Carefully walking one of the containers of black-flakey fluid to the bathroom for measurement, Miranda said, “I’ve seen a lot of GVHD of the stomach and colon and it almost always looks like this.”

In discussing this matter with the BMT physicians, they explained that their knee jerk reaction was that this was not GVHD; rather, given his extraordinarily high white blood cell count, they thought it to be a virus of some sort. Nonetheless, they committed to monitoring for another day or two and, if necessary, perform a colonoscopy for the purpose of obtaining a biopsy.

GVHD can herald things both good and bad. Of course, unmanaged GVHD can have devastating consequences; however, we also know that acute GVHD can be symptomatic of a graph versus leukemia effect, which is desired in Brennan’s case. Last week, however, given that the other engraphment syndrome symptoms had resolved, that there was no rash, and that, indeed, his lungs, kidney and liver functions were improving, GVHD of the bowel was considered to be unusual at this stage, Nonetheless, it was agreed that a biopsy would be conducted on Friday if things had not improved. If it existed, it needed to be dealt with.

In the meantime, for the rest of us, last week was an odd blend of decompression, rebuilding and profound gratitude. Getting over this last hump may have been the most emotionally challenging thing we have ever experienced, as either a family or individually. At the risk of mojoing myself with a comment like this (it seems like every time you say “it can’t get any more difficult, you learn otherwise… the hard way), it is true. Looking backwards from the point where we momentarily reside, the “hump” delineates an aggregation blocking one’s past perspective. Sitting here, today in Brennan’s room, looking out over a rainy parking lot with the silhouette of the great glass pyramid sharp in the gray sky and Brenny sleeping peacefully, I recognize how profoundly grateful we have to be, every moment, every day.

Last week, the gratitude was sometimes clouded by exhaustion, particularly for the Brothers. Nat, in particular, was struggling. These little guys have dealt with so much heavy subject matter in such a concentrated period of time. The weekend that Brenny was extubated, Nat’s basketball team was eliminated form the playoffs. He was upset, but not so much about the basketball, but about the fact that it was all over. Here was a kid who had parachuted into an existing team, made friends and suddenly… poof. On the way back that day he started crying. “Will I ever see those boys again? How can it just be over.”

The microcosm that was a youth basketball team became the lens through which everything else was suddenly filtered. All week he had a rough go of it, slipping into the profound realm of “why?” Why are we still here? Why has Brennan had to endure so much? Why do some kids get to go home? Why do some kids die?

I believe that the good news surrounding Brennan allowed us all to step back for a bit, without having to focus so intently on the game in front of us. Almost a feeling of being allowed a few minutes to sit on the bench, knowing that the game is still in front of you but also being able to reflect back on what has happened thus far. Where have we missed our plays and why the game has not gone exactly as we hoped it would.

But the game goes on for Brennan, as for the rest of us. Thank God. As we look forward to getting him strong again, we do so with an almost wondrous sense of gratitude for being able to dig deep enough to play as long as we have. Knowing this, recognizing this at every possible moment, we know that we can keep going with a sense of faith confirmed.

Brennan’s biopsy from Friday did reveal GVHD of the colon after all. But we fortunately look at this from the good side of the fence. First and foremost, it appears to be under control, as the diarrhea and nausea have subsided substantially. Secondly, it appears to be a sign that the graph versus leukemia may be what we have achieved.

He did go into this last transplant with his last bone marrow aspiration showing 18 percent leukemia blasts. With the knowledge that he has maintained a very healthy ANC since week 1 (currently averaging now around 6,000) Tara asked if the team could go ahead with the first post-transplant bone marrow aspiration.

The initial pathology report showed nothing abnormal. No leukemia under visible under the microscope. The MRD is still outstanding, which is the real test with regard to the presence of disease; but keep in mind, the 18 percent before transplant represented what was detectable from the microscope. At that time, the disease was so strong that they had no need to even bother with the MRD.

With regard to the other issues, well he is handling it all like a man. The bladder issue has subsided entirely. Indeed, he showed me what a man he was yesterday when he removed his own catheter. I told him that I would rather jump out of a plane than perform that on myself. But he just looked up at the nurse doing the job and said, “Is it ok if I do this instead of you?”

Confirmation of faith is a pretty good feeling when presented. It is a rare privilege and one that should be embraced with extraordinary gratitude and held high for others to witness.

Between all of us in our little family, we selected a different “word of the year” (“believe,” “patience,” trust); each from a different basis but each with a commonality of intent . That intent, I believe defines the words our little Band of Brothers chose for their Christmas Card. “Never Quit.”