posted May 10, 2010

“You who are on the road
Must have a code that you can live by
And so become yourself
Because the past is just a good bye.
Don’t you ever ask them why, if they told you, you would cry,
So just look at them and sigh and know they love you.”

– Crosby, Still, Nash and Young

St Jude Childrens Research Hospital features Brennan's success story in their 50th Anniversary Promise Magazine

Attending church by myself is not something I grew up doing. As a matter of fact, in such circumstances, I probably would have creeped myself out not that long ago. Things change, though. What would at one time have been a straight shot into the bowels of discomposure has transmogrified itself into an amazingly accurate channel for insight. I am not saying this necessarily with regard to the sermon du jour, or the scripture readings (although they often do serve as tools with which I untangle my confusion or reorganize a cluttered mindset), but more from the stillness and quiet focus of being alone amidst the vastness of everything implied. The relative yet unknown poignancy of luminous icons, the surrounding images in stained glass, the architecture itself, always consistent regardless of the place, as well as every living (and formally living) soul around me on that particular day; all seeking something, whether for themselves or someone else, each and everything is there for a reason. Sometimes relaxing, sometimes amazingly relevant, but always soothing and predictable, it has become a ritual of comfort.

My reason for being in the mix has been pretty much self-evident over the past three-and -a-half years. But as I focus my intentions on Brennan and his fellow warriors, their healing, as well as the capacity to to find happiness and goodness despite the circumstances, I have touched the most burning life lessons that I may ever have the honor to comprehend.

For sometime now I have been wondering how, if ever, I will find the appropriate conclusion to these Carepages. Not to say that I ever intend to stop keeping people informed about Brennan via our blog and website; but I admit doubting if, outside of the worst case scenario, if there would ever be an appropriate jumping-off spot from which I could deliver a final, meaningful, chapter to this story that has become the most central part of my life and the life of each member of my family. It seems like everything communicated thus far has implied a “to-be-continued” type of conclusion. There have simply been too many unknowns and changes with regard to Brennan’s health that there truly has been no other way to tie things up.

Suffice it to say that this should never have been a concern. All along, Brennan has been telling the story for me, making the decisions to keep fighting, surprising us with his strength, inspiring us with his acuity… the story has always been his.

Sitting by myself in the pew mid-day on a Monday, with about a dozen or so other folks all quietly sitting alone, I looked up to see the painting of a baby boy, held by his mother, but sitting upright, his arm extended as if, even at that unworldly age, he was teaching and she was listening. I smiled, knowing that the message I had been seeking was already delivered.

The past month plus has actually been a fairly big blur. While we have primarily been living at home, there were more times than not where both Tara and I felt as if this story was developing a difficult new chapter with regard to Brennan’s ongoing health issues. So, while the Blog had been silent, we were up to our eyeballs moving back and forth between hospitals, cities and the queazy and all too familiar clutch of the eternal crapshoot.

It all started with the digestive problems, which had been effectively the only real concern lingering since first annual post transplant check-up at St. Jude in late February. But even as we arrived home back then, trying hard to ride the wave of good news surrounding the success of transplant #4, and what seems to be a very stable remission, his gut problems began to take on a serious level of concern. The pancreatic enzymes, which were prescribed as a means of jumpstarting his digestive system, seemed to have no effect. Bloody stools, became hourly bloody messes. He was hungry, and could not eat. And he was losing weight at a rapid pace.

Quite simply, the issue of malapsorption had reached beyond a climax and, with acute pain and even more bleeding, he was admitted into the Children’s Medical Center in Augusta during the last week of March. By the time he checked-in, the “size 5” pants we had found in the attic were falling off of him (he is 10).

As many know who deal with cancer in their lives or the lives of loved ones, ruling out the worst case scenario is always the first order of business. In this case, Chronic Graph Versus Host Disease (CGVHD) was a true concern. The gut has always been a favorite destination for this potentially terminal condition to manifest itself; therefore, it was the focus of much discussion and clinical investigation. Outside of secondary cancers and toxicity issues surrounding his treatments, it remains public enemy #1.

He was inpatient there for roughly 5 days, with a colonoscopy and endoscopy performed on the fourth. While his upper GI tract appeared normal, the lateral portion of his colon was clearly inflamed (but to be honest with you, having seen the photos, Tara and were relieved that it did not look worse. His bowel production had been so bloody and nasty that I expected the films to reveal a shredded mess; instead we saw slides of what appeared to be a reasonably normal looking colon but with some redness and inflammation.). But, of course the eyeball diagnosis was not the intent. Biopsies were taken and, to brace ourselves for the worse case, and what seemed to be the most probably scenario, Brennan was discharged from the CMC to the care of St. Jude on March 30. If it was CGVHD, this meant that immune suppression, and therefore an exponential step backwards was in store; and the place to deal with this was not Augusta, but Memphis.

It was the week before the Masters Golf Tournament, which had been a targeted high point in Brennan’s schedule since he arrived home. Being off the immune suppressants for just a few weeks, and presumably having license to do more than he has in recent memory, he was looking forward to hanging out with his brothers and friends, getting autographs and soaking in the powerful and beautiful energy produced in Augusta that time of year.

At the same time, he was more than aware that something was not right. And, as with every single other occurrence in the past when Brennan told us something was wrong, something was wrong; and, in most instances, very wrong. His his system was not working properly, nor had it been for multiple weeks at this point. This, compounded with excruciating pain, he hailed the morphine fairy and complained not one minute about being hospitalized.

We have been back and forth to Memphis cloaked in uncertainty so many times that to use the phrase “deja vu” seems almost redundant. But as the plane made its approach to our other Soul City, the landmarks below reached up to, us looking down, making themselves known and ourselves comforted at the least by familiarity.

“There’s Overton Park,” Brennan pointed out. “The Target House is right there too,” I said back to him as we began a friendly unofficial volley of “Eye Spy.”

“We probably still have some friends in there,” Brennan said looking quietly down. I stared at him for what seemed like a long second. I noticed his beautiful curly hair and angelic profile.

I thought about the photograph of him in the pilot’s seat, looking back at me with powerfully confident smile from our very first trip to Memphis in the fall of 2009. “I know we do,” I said.

Fortunately our arrival in Memphis coincided not with the familiar air of uncertainty that had greeted us in the past. Going straight to the hospital clinic from the airport, we were greeted with news from Augusta that the pathology report that the “colitis” was not GVHD but probably Inflamed Bowel Disease. IBD, as it is called, can be cause by an ineffectively regulated immune system (which to me and Tara did not seem out of the questions, considering all of this began when he was under the influence of heavy immune suppressant drugs and steroids) or an infection of some sort.

I cannot explain what a sense of relief this provided me and Tara, who were both quietly preparing our focus for battle once again. And while we still were eager to obtain a second option on the GVHD from the St. Jude’s pathologist, the source of the issue would determine the treatment protocol. Not to mention the fact that this report provided no physical relief for Brennan, who was still in excruciating pain and unable to eat properly. Therefore, we checked into St. Jude once again and we waited.

Finally exhausting all of the cultures, biopsies and tests that we could possibly consider in Memphis, we did make it home in time for the Masters Tournament, late Wednesday night and in time for the main festivities. Reuniting with the Lackie Family in Memphis earlier in the week had allowed Brennan the comfort of his home away form home while enduring the extreme discomfort of IBD and more than full days at the clinic. But, having exhausted every thing we could test for, and knowing we were doing everything we could for him ourselves, we left for Augusta with no real resolution. He was still plenty miserable as a result of the IBD, but while we waited a game plan to treat it, we did decide that he should receive a new pic-line the following Monday morning in order to begin receiving IV nutrition. If we could not treat the problem, we could at least feed him. But first we would enjoy a few days off.

So, back from Memphis, he forced himself out to the golf tournament every day for as long as he could stand. Looking back, I don’t think he watched more than ten minutes of golf at any time before a spasm, cramp or bathroom call required evacuation to the closest place for shade and comfort.

But “make it” he did, once again, just like he has every single year, looking forward to each of the past four tournaments even when each one seemed like an impossible milestone. Like year’s past, he watched almost everything he saw from the comfort of my back, serving as piggy-back transport from place to shady place. But as Sunday rolled around, we woke up feeling a bit stronger. Perhaps it was the coincidence with Easter Sunday, on a beautiful sunny morning at what is truly one of the world’s most special settings. Perhaps it was the uniqueness of actually celebrating Easter mass with all of the family and a number of friends, old and new, in the green and quiet secret corner of a garden within the golf course itself; or perhaps it was the fact that, while still in pain, Brennan started looking better that day. He had begun eating a little bit more, his color was coming back, and he was once again amongst us.

But as this milestone came and passed, we were left with a dizzying sense of vacuity, knowing that the gut issue was still unresolved. By 6am the Monday after the big tournament weekend we were back at the CMC to get a new “Pic-line” installed in his aorta for the purpose of delivering IV nutrition (TPN) while we waited to sort out the IBD issue. But unlike the countless times past when Brennan was the one telling us that he “needed” the assistance of the hospital, in this instance, he was telling us “I do not need any help. I do not need to be here.”

Nonetheless, he had been shrinking at such a rapid pace over the past two months that we felt there was no choice. So, he was admitted to the CMC for the purpose of getting the line, getting the nutritional mix balanced within the TPN fluids themselves and, of course, trying to finalize a strategy for treating the IBD.

The first night there was fine, and so was the next day, but as I came back to his room soon after dark to spend the night with him, a fever spiked up to around 104f. So when it looked as if we were off to a quick two day evaluation at the hospital before heading home, we were now in the hospital for what looked like a week. But as with every other seemingly awful thing to come our way in the past, this one too emerged with a silver lining.

Being forced to stay inpatient for longer then planned sort of forced the medical team to watch him a bit closer. And as they did, they witnessed what was a true miracle recovery as Brennan’s fever broke and he began to regain his normal color, eat normally and gradually demonstrate that he truly was turning a corner. When things change in this world, it is often difficult for parents to articulate physiological changes in the patient/child to a medical team which is not in position of witness. But in this case, they were witness, and within a day of what looked like yet another turn for the worse, he simply got better. And we left with a game plan to simply fatten him up a little bit with the TPN and watch him, hopefully, continue to get better.

By that Friday, he was out, albeit attached to a backpack full of TPN; but within the blink of an eye, he transitioned from a teetering sickly child to a boy filled with renewed strength, and a renewed, and long-overdue, sense of being a normal functioning member of our family. Within 24 hours of leaving the CMC, we found ourselves eating dinner outside at the golf course on a late Friday afternoon. Brennan was out on the putting green with a virtual entourage of fans and other golfers, either patting him on the back or challenging him to little putting contests, most of which he won.

A late thunderstorm passed through, and within a few minutes, the evening air was cool and enlivening. We left the golf course happy and truly feeling like we had left one world for another. As darkness cloaked a week of aggravating uncertainty and with the coolness of a new day surrounding our family, we walked back into the house for the night. Brennan suddenly left for his room.

When Tara walked in on him, he was in the bedroom by himself, crying. “What’s wrong?” she asked. “Nothing, Mommy,” he said. “I’m not sad, I am actually happy.”

He then looked up to her with a serious focus and told her, “Mommy, I have so much to look forward to, don’t I? I am so glad I didn’t quit.”

I hate to think back to the crossroads in our past where “quitting” was either being sold to us as a serious option for consideration, or presented to us as what, on at least three occasions, seemed like the inevitable. But somehow, this little boy was able to focus through it all for something that he felt he must hold onto.

There are so many kids we’ve met along they way, each its own story of grace and human endurance, telling us that there is strength within each one of us that allows us to do what the broader culture defies us to do. How many times are children, and people who should be instilled with hope being told to turn their backs on life, or at least a chance to live, and love and to cherish the day?

There should be no sense of defiance in looking forward, but simply that of reward. Our lives have been forever changed by cancer, Brennan’s certainly. Today, back in school with his peers (no longer reliant upon the supplemental nutrition and virtually free of medication with the exception of some supplements) there is no reason to look at him and not feel confident that he will be a creative and energetic adult, father and mentor some day. He may be a nurse on the transplant floor at St. Jude (Which he says he wants to do). He may be a PGA Tour player. He may be a quiet and loving advisor for others.

Cancer has changed his life. It has limited his capacity for realizing what most people hope to realize. But it has not changed the capacity to dream, to hope and to look forward.

Cancer is itself, analogous to our dreams, powerful and creative to transform itself in ways that defy treatment. As Siddhartha Mukherjee says, “In a cancer cell, the circuits that regulate cell division and cell death have been broken, unleashing a cell that cannot stop growing. Cancer cells grow faster, adapt batter. They are more perfect versions of ourselves.”

But as with the cancer cell itself, the same source which instills within it it’s sense of formidability can also unleash within our own hearts, within our souls, the capacity to awaken, seek and truly experience life. Like a rose snipped from its stem, the promise of something new, something potentially sharp and dangerous, but beautiful, is revealed from the place once occupied.

To look cancer in the eye, and to see it as a beastly, yet normal part of our own physiology, our capacity to live each day with simple, unlimited faith in the next is separated from the darkness and fear that otherwise cloaks the beast as something that should be not part of ourselves. But part of ourselves it is. Unfortunately, in some cases it is simply more pronounced that others.

There as still bumps in the road, and uncertainty in Brennan’s future and, therefore, the future of our family, of the Band of Brothers. But is there not always uncertainty? We therefore see no choice but to look forward to tomorrow. Brennan demanded it of himself. He changed himself from a condemned soul to a living one. Through his will, his inventiveness even, the very spirit of the cancer was harnessed for the purpose of living for another day. From this sense, he has defied everyone and everything. Medical suggestions, that would otherwise have undermined a recognition of fullness in a limited and, potentially incomplete quality of life; as well as the determination of the disease, which flourishes at the cost of our very lives, have both been eluded.

And regardless, of what the future has in store, no matter how physically miserable we may become, Brennan has taught us that there is grace and beauty and fullness of love in even the most helpless being. And, within that fullness, is the true power of living.

Look around. With the exception of art and of images created by people for the purpose of triggering emotion within us, the pictures we see everyday are not exactly those of wine and roses. Even the pictures looming above us in virtually every church in the world, while brimming in color and light, depict scenes of torture, wretchedness, humiliation and defiance of custom. And, despite the consequential nature of virtually every vignette, they are beautiful. And from the light which streams through each pane, through each colored cell of each story, the message is there. Live with a purpose. Love, and look forward.