posted in CarePages June 9, 2011

“No one is as capable of gratitude as one who has emerged from the kingdom of night.”
Elie Wiesel

By 10:00 am this morning it was over ninety degrees outside. We crept out of bed. It had been a long night. Walking out into the full June sun, it felt early. For some reason, the vomits kicked in around 3am without warning and with much vigor.

As I generously slathered Brennan in sunscreen from head to toe before making the walk over to this isolation clinic I was concerned that he was finally going to have a bad day. Getting dressed he was clearly tired, and quiet as a mouse. The room smelled like a blend of regurgitated Nacho Cheese Doritos and baby formula (which I mopped, wiped and washed to the best of my ability before finally rationalizing my efforts sufficient to get back in bed around 3:30).

Overall, Brennan has been on an amazing roll, directing family art projects; playing all-time-quarterback; badminton; Nerf hoops; X-Box games galore, and generally setting the pace for the family since he was discharged from his gallbladder surgery a few weeks ago. He all talk. All curious. He is the joke-meister, constantly reading and reciting, “Daddy, daddy, stop! You’ve got to hear this one!”.

This morning seemed like it was getting off to a different start. Given how little sleep he got the night before, I assumed he was going to make his morning clinic appointments in his pajamas (on yucky days, its all about comfort, rolling across the campus from his Grizzly house apartment with eyelids at half-mast with a “just get it over with” type of attitude); but looking at the selection of clothes I laid out on his bed, he picked his new running shoes, a new pair of shorts and a new tee short we bought him form the Civivl Rights Museum. It says, “I AM THE DREAM.”

“You know Daddy, I think I want to take my art supplies,” he stated much to my surprise, sliping the new shirt over his new black head of hair. Not feeling so alert myself, I just knew we were sticking with “jamas” for the 4+ hour visit at the hospital. His confident and quick decision seemed like a good plan to me. But mostly, I was astonished and delighted how good my little soldier was dealing with a day that offered him every reason in the world to stay in bed, or at least gripe a little bit.

Once there, everyone at the hospital greeted him with the same sense of astonishment. The “B” clinic nurses and docs had seen him just this past Thursday, but walking in this morning, seeing the smiley little boy diligently coloring “Thank You” cards for members of the staff (something he took on all on his own), the first reaction of every single person was to pause and stare, mouth agape. “How you feeling Brennan?” they would ask shaking their heads, either before a perfunctory physical examination or a discussion with me about nutrition or medications. “I’m fine,” he responded every time, matter of factly, his eyes never losing focus from his deliberate coloring project in front of him.

With the exception of the tubes protruding from his chest and abdomen, he seems totally that. Fine. Daily progress is exponential. At this stage there is not really much to worry about other than the rare but sudden bouts of nausea. Otherwise, there is the occasional g-tube pump alarm, usually from an occlusion of some sort resulting from a kink in the line or sometimes an idiopathic defect in the bag’s anatomy. But compared to two weeks ago. Blood infections… Hepatitis liver status… GVHD…

The TPN feeds have been turned off, hopefully for good, representing the most delicate and agonizing of the daily medicine rituals. As of yesterday, Brennan is now receivig most of his nutritional needs from the g-tube, running the vivonex formula directly to his tummy for 18 hours. The eight hour respite is designed to increase over time, hopefully giving him more and more opportunity to crave conventional food on his own.

Its only been a couple of days, but so far so good. Since his first g-tube intermission, he has requested potato chips, Doritos, gum, ice cream , Gatorade, Lemonade and Sprite. Not exactly the menu prescribed by his nutritionist, but a craving is a craving. Tara and I are delighted with the fact that he is eating anything. We don’t have an appointment until Friday, but by then I am convinced that the g-tube will be a secondary nutritional function.

Although I most likely witnessed the majority of his Frito-Lay diet projected onto the floor early this morning, I do take comfort in the fact that at least the kid ate enough of stuff last night to throw up. And it phases him not a bit. Before clinic, he had hardly brushed the foul spew from his tongue before asking for another bag of Nacho Cheese.

But these are just details. The bottom line is that we are coming home, one week from Thursday. And there will always be details. This week is it is nutrition. Next week…. The one’s mentioned above will soon be compost for those we face next week. Hopefully they will include some fewer meds, less nausea and a more regular diet. Even the prospect of such is enough to jump for joy.

But coming off of our fourth tour of duty in this war, we have grown to realize that jumping for joy is a precarious exercise when one holds such precious and delicate cargo. We are joyful. We are grateful beyond measure. And we are real tired. We’re sticking with the soft shoe dance for now, elegant, cheerful, but safe.

I was tentative and anxious about leaving Memphis one year ago. When you get right down to it, all that matters, all that we are grateful for, all that we fear, nothing has really changed. Does it ever? While our circumstances are painfully defined, are they really any different than anyone else’s? Same thing, different time.

With Brennan truly at his best in many, nay months, this past Sunday was one of those gifts of perspective that come along only now and again. It happened on a scorcher of an afternoon. Walking up the steps to the house of the boys headmaster, Maria Cole, air conditioners everywhere in the neighborhood were screaming full bore; some humming loudly, others grinding it t out in raspy mechanical harmony. Inside, things were settled. As soon as the heavy oak door closed behind us, the cool silence of smiles and open arms greeted the five of us as family on a cool Christmas Eve.

Friends were gathered on this day for the purpose of making pasta, ravioli specifically. Some donned in aprons, scurrying from the kitchen to the dining room, which was fully outfitted for the assembly line mechanics of production; filling and slicing the pasta sheets, slicing them, securing the corners (otherwise known as “forking” wherein the tip of a dinner fork placed a herringbone style seal around all the edges prior to a “flash freezing process and storage for a feast later in the week.).

The pasta production itself was located in the 1920’s era galley kitchen, small but well lighted from the western sun filling the adjacent sunroom like an enormous votive. People were stationed in the kitchen or at the table, others moved from room to room shuffling plates, flour, olive oil, and the assembled ingredients themselves. What sounded like a contemporary italian singer hovered from an I-POD as we talked about the end of the year, the flood, going home. Tara and I listened to Maria and her brother David about the history of and the method for the ravioli. In the sunroom, someone opened a bottle of wine.

The day formed and we all settled into our duty of choice. I was a “forker” next to Brennan, who pursued his job with a common kitchen fork sealing the pasta edges with alacrity. Even as the day wore on, when I was hoping that we had stuffed our last shell, another bowl of filling appeared to Brennan’s pleasure. “Alright, let’s make some more,”: he exclaimed, raising his fork in salute above his navy blue apron covered in flour and wrapping his entire body from neck to toe.

Christopher appeared from the kitchen with both arms draped in pasta sheets grinning from ear-to-ear, a process he mastered with Ms. Maria in what seemed to be no time. “Here I come, you better get ready!” he exclaimed as he marched into the dining room trying not to trip over the adult length apron enveloping him much like Brennan. With the zen like process under way, stuffing, forking, stacking, we all just did our thing. Someone would occasionally peer over one’s shoulder for the assumed purpose of inspection, often to poke fun, but mostly spreading the contagious enthusiasm that silently consumed us all as we spent an entire afternoon just being together.

With a break in the action, waiting for my next shift, I held Brennan’s hand. He looked up at me and smiled the way only he can. Brushing the flour from his nose, I smiled back Late afternoon light filtered through the translucent lace curtains, floating slowly from side to side by the the little floor fan quietly humming through the late sultry afternoon sun. Shadows danced on the table in time.

It was almost exactly one year ago that I recall sitting on the upstairs screened porch of the Bluff House transfixed by it all, watching the curtains dance to the new rhythm of our lives as we hopefully and somewhat confidently prepared to leave Memphis for good. At that time, I was writing a Carepage about our extraordinary gratitude with which we prepared to leave St. Jude; but also contemplating the awkward sense of anxiety for the same reason. As with now, the sense of jubilation was heavily tempered by an odd yearning for the closeness we had developed within our own little family and the many people who have become forever part of our lives. I yearned for the place I was so fortunate to leave. Alone on that musty old daybed, the tattered linen curtain flapping quietly above me, my world could not have been more acute; my mind guiding itself through a backwards scroll of countless names who collectively delivered us to that particular cross-roads. Momentarily, it was a place of safety.

Stepping back on to that old porch this week, there is not much of a breeze to keep me outside. But as we begin to clear off our shelves and prepare our boxes for home yet again I am greeted with the same roster of characters to whom I offer quiet thanks.

Martha is here, as she has been for so many monumental times throughout this trip. This time, she has little to do in the role of nursing and everything to do in the role of keeping the boys occupied and having as much fun as possible while Tara and I pack, ship and clear out of here.

Evenings we plan to visit many friends for dinner and hugs. The Ravioli is scheduled to be consumed with much ceremony at the home of Fletcher Golden, Christopher’s mentor and our dear friend. And from a grand finale perspective, Brennan will be participating as an honored guest at the Fed-X St, Jude Golf Classic this week (the old Danny Thomas event…. watch for him on Sunday as they offer the winner his check). We are looking forward to that as a well-timed farewell send-off. From there Nat gets the pins removed from his arm on Tuesday and then we are off. Home awaits.

I pray that we arrive with the courage to shout for joy every possible moment despite the fragility of it all. But, as we leave, there are too many friends and families being dragged back into the fight everyday. Our friend Carissa Barrett is seriously struggling at home in the hospital. Cassidy Clark from North Augusta (who underwent her third transplant almost simultaneously with Brennan) is here for a bone marrow biopsy because of blasts in her peripheral blood. We do not know what’s in store for Cassidy, but we do know that her parole was too short. And our brother in arms Patrick still waits on his bone marrow to grow. Our prayer list changes but rarely is it pared down.

We are truly joyful inside and as confident as we can be. But looking around, we know we must seek comfort in the flickering shadows that dance while light still shines.

Brennan will come back to St. Jude once a month for regular appointments until further notice. We are praying that both the central line and g-tube are removed this summer in time for to swim, but we know we are walking home with a miracle. We are in no rush this time. We just want him home for good. We therefore dance lightly but know that Brennan will arrive home confident and ready to move on to the next chapter. We pray that the music plays on.

NOTE: I also pray that once we are home I can truly taper these Carepages down to simple updates and progress reports. I hope to spend as much time as I can with these boys once home, and have the full intention to read back through and organize all of this stuff for others, hopefully with this as a final chapter. (I thought that had occurred last year but…). Like a lot of things, its a goal. But arriving home with all three of our children is the real goal. For that, Tara and I offer our most profound gratitude for everyone who reads about Brennan, who prays for him and who genuinely cares about all of these kids who fight so hard. God bless and Press On.