Searching, Feeling, Holding
July 15th, 2013 by Turner Simkins
With a deep relaxing breath my eyes briefly close and the tension from my hobbled race through the Columbia, SC airport begins to fade. My thoughts drift to my beautiful new book, “Peace Like a River,” which sits dog-eared in my lap waiting to be finished. I close my eyes for a minute and drift.
With a soft and thoughtful brush of my hand, my eyes are drawn open and pulled to the same devoted and loving face that has both inspired and sustained me over these past four years. Confirming my attention with a caring glance, Brennan tightens his little hand around mine and smiles “thank you,” as the plane begins to roll toward the runway and thereon to a summer vacation that, even one year ago, would have been considered equally unrealistic, wishful and miraculous.
This year, a destination on the coast of Rhode Island awaited as highlight to a summer that, while hitherto undefined, had been prayed for ardently. Two years ago, we were on edge that an unprecedented fourth transplant would hold and, thereby, establish a third and lasting remission. Last year, chronic Graph Versus Host disease was villain numero 1, which is the worst possible side-effect and number 1 killer of transplant patients, particularly ones with imperfect stem-cell matches (like Brennan). But by mid-last-summer, the semblance of a groove and routine began to take shape. He had become independent of the feeding tubs and, while still subject to daily doses of immune suppressant chemotherapy, was feebly weaning his way away from the literal pile of daily medications. This is of particular note in that, one year ago almost to the day, Brennan was cheerfully packing his trunk for camp Rainbow, where he experienced his first true sense of independence as a living human being.
This year, the Chronic GVHD still looms, and daily chemo (taken in oral form) is still part of the morning and evening routine, but it overshadows our world no more than any of the other “risks” of simply being alive. So, as the engines surge our aircraft forward and upwards towards our destination, we lay our heads back in our seats and close our eyes towards the potential of what’s in store, but still clutching hands for the amazing adventure we have already lived.
Christopher sits opposite Brennan from me on this particular plane ride. As always, he is at his side. His army fatigues are tucked deliberately into his Austrian army boots, which he wears religiously every day. Despite our pleas to leave the multi-lace shin-length combat shoes for more practical airport security-wear, he insists that this is part of who he is, so he prevailed and did not slow us us down a single minute. If anything, the TSA employees were impressed with his propriety and careful attention to formality at his young age.
Listening to presumably county music on his iPod, Christopher also looks over to me and beams the most brilliant smile that only he can deliver. Nat slouches in the seat to my right, with his teenage mind presumably drifting towards thoughts of what he can possibly accomplish on this vacation that will satisfy his craving to play golf every minute of the day. He is growing up and somewhat away. With his head leaning against the window of our small aircraft he looks doleful and I worry that he is going to be happy with a house full of kids younger than him, yelling constantly, playing tag, and generally doing things from which he has grown detached; but I still see the little boy in his face and pray that this trip will deliver him a wistful diversion and an innocent sense of clarity. I think of the many wonderful days this summer that I have dutifully and pridefully watched him compete like a true champion player and gentleman in his junior golf tour events. With a little punch to the ribs, he glances at me askance, but with enough of a twinkle to keep me hopeful. Turning around, Tara sits alone, typing away on what I presume to be one of her many beautiful and meaningful blogs. She too smiles, then reaches up and over to touch my shoulder with the same loving touch as Brennan.
We are headed to Rhode Island for a number of reasons. First and foremost, we can all be together at a beautiful place and experience a new adventure in what has hitherto been uncharted domain for a Rice family outing. All of Tara’s family, parents, siblings, kids, and a good number of cousins from up in the New England territory are gathering together for a week. A close family friend has arranged for us to rent a former convent in Watch Hill, which is effectively a 17 bedroom classic New England beach home, that prior to the Great Depression had been the opulent home of a wealthy New Yorker. The character of the place seems not to have changed since the by-gone days, although the third floor has been converted into somewhat of a dormitory, presumably for the nuns who resided here on a more regular basis at some point in the not too distant past. Its musty character triggers memories of vacations past, smells of familiar homes long ago with families gathered for celebration, and time itself. Relics of furniture and decor fill every room, each with its own story and experience. From the plaques in memorium of past residents, to scattered antique remains from the opulent Gatsby era, to bookcases over-laden with board games and dog-eared paper backs, every room brims with charming artifacts for our curiosity, as well as optimum elements and features for hide-and seek, a game which began intrinsically and immediately upon arrival.
For a week this massive homestead serves as a revolving door of cousins, old friends and new guests. With many of the Rice family relatives living in driving distance, and other friends who call this neck of the woods their summer home, children and adults of all sizes and ages come and go by the day. Big crowds, gargantuan meals, and liberal reverie are the underpinnings of any such family gathering, delivering more than enough personality, interests and options for any individual in attendance. For Brennan, however, it represents a peripheral tradition that has lived-on outside, and in spite of, his life and circumstances.
For an entire week, Brennan has the favor of living as a regular kid, among kids who know him, understand his limitations and appreciate his strengths and talents. Not that other kids elsewhere, at school or around the pool at home do not (most do), but among larger crowds of kids his age, it is very difficult for him to participate in many of the pursuits and diversions of kids his own age. Place him in a room with kids he does not know, and he tightens up. Place him among cousins, he shines.
Sitting on the beach the first day upon our arrival, any passerby watching this happy little boy basking in the splash of every wave breaking and twisting around his little body would have no reason to presume anything special about Brennan. His hair is lush and full. And with the exception of more bodily scars than a kid his age should bare, he looks like a regular little boy. With nine other little boy cousins (and one distinctive girl) near his age splashing around him, he suddenly turns from the crowd and screams in anticipatory glee as a large wave buffets his little body down into the crashing foam. Collecting himself from the retreating surf, he runs up to me, dripping, and grinning from ear to ear. That smile, while unchanged his whole life, like sunrise, delivers something new and beautiful to admire every time.
But his life and routine since his last inpatient stint at St. Jude in mid 2012 has been anything but regular. Since that time, and up to February of this year, the status and maintenance demands of Brennan’s GVHD had him scheduled for monthly and often times bi-monthly visits to Memphis. This time one year ago, making plans for a summer vacation trip such as this had been impossible, given that both his medical schedule had been so unpredictable, and the GVHD status was such that many normal activities were considered verboten. Sunburn in particular had been, and remains, a condition to avoid at all costs, as the immune response to the skin in patients with Chronic GVHD often incites an overreaction in the immune system which, in bad cases, affects immune rejection of vital organs. Musty places like that in which we inhabit this summer were off limits last year, given the concern of mold and fungal interaction in an immune-compromised patient. And of course, there has always been the concerns associated with osteopenia, which, while also most likely contributing to his lack of growth and small size (he is on the 1st percentile of kids his age today at 55lbs), also makes him very susceptible to fractures and injury.
Despite his fragility, his determination to keep up with and do things like other kids has, if anything, grown since his in-patient days at St. Jude. In July of last summer, he attended Camp Rainbow for the very first time (located at Camp Twin Lakes in Rutledge, GA, Camp Rainbow and Camp Sunshine was established to serve kids either post cancer treatment, and in some cases, in-treatment, for many years) with his brother Christopher once again at his side and accompanying his older brother to this most atypical of camps dutifully and happily.
Fortunately, Brennan’s school has also been totally in touch with his limitations and unique schedule demands and, actually established a custom curriculum that has allowed him to physically interact with this peer group, while working to his own pace. This offers him the hope of catching up to his classmates within a year or two. Having effectively dropped out of school in first grade and reentering in 5th, he is woefully behind in progressive subjects such as mathematics and vocabulary. His aptitude, however, is strong, and given the opportunity to participate in new material such as history and certain reading lessons, he is able to hold his own. He is determined to physically be in the same room as his old classmates; on the other hand, he dreads recess, when his diminutive frame is more relevant to the sidelines than active participation. We believe we have a workable plan, but the hill is steep.
Having a low dose oral chemotherapy as one of his morning and evening medications, he often times is simply too tired to wake up. Walking into school at 11am or noon not only stiffens Brennan’s advancement goals, but the volatility of his schedule is such that both Tara and I are on call every day to tend to whatever unpredictabilities are likely to arise. As such, getting our lives back on track has been anything but routine. The work groove we hoped to have found upon return to Augusta remains far from defined. Fortunately, my work is flexible enough that I can afford a day to spend with him when he does not feel like school, or to accompany him to Memphis, or to accompany him to a scheduled and unscheduled doctor’s visit at the Children’s Medical Center in Augusta (he still must undergo the monthly phlebotomy during which time is blood chemistries are evaluated confirmed simultaneous with the removal of iron content in what is effectively a monthly blood mobile donation). Fortunately, our new home in Hammond’s Ferry is ideally structured for my home and office demands. Unfortunately, while conducive to what I see as an amazing gift to spend days with my children, such flexibility is not necessarily conducive to the generation of a conventional work career.
And while the schedule of the typical lawyer is not conducive to such outside demand, Tara has worked valiantly to balance her time at the firm with the same demands for which I remain on call. We had been hoping that 2013 would be the year in which predictability of schedule would crystallize and balance would be established. Tara had established some aggressive goals with both her demands as an attorney and her new calling as a certified life coach. At least that was the goal beginning this year.
After a very positive annual assessment at St. Jude in mind-February, it was determined that Brennan is still defining miracles. The Chronic GVHD symptoms had subsided to a great degree, and while it was determined that he will remain on the daily chemo for at least another year, he once again baffled the experts at his capacity to both overcome the worst and rebound from complications hitherto defined as permanent. His pulmonary function, which had been declining and of serious concern this past fall, was stabilizing; his bone density tested “normal” (at least for a while… read on); his neuro-function, while nebulous, was determined to be within the normal range; and, of course most importantly, there was no detection of residual disease from his AML. Given the pounding that his brain endured while in ICU, his doctors claim that he is as much of a neurological miracle as a cancer miracle. The tests were well beyond the expectations of everyone, and Brennan was given a 90 day reprieve between hospital evaluations… the foundation of a new groove had been laid.
But that particular groove never really made it beyond the gates of St. Jude, that warm February afternoon. After stopping by the boy’s former Montessori School for a brief reunion as we left for Augusta, Brennan started to limp. Over the next couple of weeks he began to limp more, until the pain became unbearable. In early March a CT scan revealed something in his femur that was presumed to be either a fracture or a malignancy. Given the positive bone density tests from just weeks before, I must admit to presuming the worst. Knowing his predisposition for secondary cancers, this news hit us like an overwhelming swell of heavy, freezing water. The haunted ghosts of years’ past, deluged my spirit with such weight that I could hardly function for the three days until a biopsy confirmed that indeed he had somehow, inexplicably fractured his femur.
Needless to say, this anomalous good news was more than a weight off of the proverbial back. But it did reveal that, perhaps some of the tests from February were not as telling as we had hoped. Between the fracture diagnosis, Brennan has experienced yet another fracture of his thumb (albeit a legitimate break in a car door); but he is demonstrating that his bones do not have the capacity to heal. He has already undergone one surgery (in March) to repair the thumb, and has had numerous casts installed, all to no restorative avail. He is scheduled to have another surgery in late July to install screws that will hopefully bind the fractured thumb bone together once and for all.
It has been suggested that it would be in his best interest to have the surgery sooner than later. But, from the perspective of self-esteem and just living life as a kid, if only for a few weeks, the meaning of this vacation, to him, far outweighs the practicality of an immediate surgery schedule. And he and Christopher are also planning on their second year at Camp Rainbow, for which they will depart almost immediately upon return from Rhode Island.
I guess, for the month of July, we do have a groove. Nat is playing competitive golf (like no one in either of our families could have ever dreamed); Christopher is playing lacrosse now, and loving life at Hammond’s Ferry with both old and new friends and adventures along the riverbank; and Brennan has a full month to be a kid, and to be recognized by the one’s around him as just another chip off the block.
It is cool on the Rhode Island coast, and as the week progresses, I rest peacefully knowing that Brennan is in a place that he can truly engage with kids he loves without fear of overheating, or worrying about his mother and father constantly badgering him about UV rays and not over doing it. I am awaked from an afternoon nap with the sound of children playing baseball outside of my window. I slip from my little bed and find an old woven bench from which to rest and watch. I lean forward on the window sill and rest my chin. There is a home run of sorts, as the ball is launched down the hill beyond sight, pursued by the gang of nine boys, all laughing and rolling down the expansive lawn above the sea, in rollicking search of the lost game piece. Mimi smiles in pleasure from the wooden bench-swing, gliding too and fro in her front row seat. Baby Ward crouches at her feet in his little blue sun suit. He prods a curved stick into the ground, intently searching for something rapturous, like bugs or tunnels in the ground. The wind blows and I notice that it has become late in the day. To the west, the bright orange twilight of the sky is reflected in the caress of faint clouds. Their lateral whips vaporize into a cobalt darkness, under which resides the ocean and shores yet to be visited by these children. The residual sun has fallen behind the big tree, which shade’s Mimi’s swing. Leaves rustle in the quiet afternoon wind and the day quietly and peacefully slips along. Brennan emerges from around the house, victorious and beaming, lost ball in raised hand with all the boys laughing in tow.
Every time I see his hand holding a ball or game implement of any sort I must admit feeling apprehensive. The fracture of his thumb is still there, and I often have misgivings of our decision to override the more prudent medical advice for repair over living summer as a carefree kid. But how can we subject him to a cast on his arm and limit days like this? There is plenty of medical evaluation in the cards without having to add more. After the surgery later this summer, we will soon be returning to St. Jude for more neurological evaluation, Early this summer, Brennan began showing more intense symptoms of short term memory loss and irritability. “Waves,” as he calls them, occur suddenly like an un expected bolt of electricity. At these moments he is unresponsive and for sometimes minutes appears emotionless, still and uninhabited. They are often followed by sharp irritation and short outbursts very much un-Brennan-like. But, as the doctors say, they are a form of seizure and, while non-convulsive or violent, they are episodes nonetheless that at this point are not predictable. To strangers he may seem drugged. On other occasions like an impatient spoiled child. But he too notices how different he is at these times, and always apologizes. Schedules and activities which he does not understand do not seem to compute like they used to, and should. An MRI of his brain during our June visit to St. Jude did reveal material scar tissue in his hippocanthus, which represents the part of the brain that would impress upon such symptoms. Whether this is a chronic problem or something he will work through, is yet to be seen. Of course, we pray for the latter.
Like the “waves” he feels, nothing much is predictable, but prayer, hope and the resolute effort to enjoy what we can. With all of his cousins gathered together one evening, the grown-ups helped each child ignite, inflate and release a series of paper sky lanterns, both as a thanks for such a beautiful week and as quiet benediction for all. Just one month prior, Tara, the boys and I respected this same ritual at the memorial to the boy’s best friend from St. Jude, Cameron Varnell, who after two transplants, could not outrun the malicious suppressive might of AML (“there are just three of us left now, Daddy,” Brennan reflects as we watched Cameron’s prayer lanterns drift away).
As these lanterns quietly hovered then drifted skyward, a hushed prayerful awe overcame our spirited group of little boys, each looking stunned, peering skyward, mouths agape with their little faces reflecting the orange hue of each illuminated craft until they drifted skyward and away, each one existing brightly and meaningful until it expired into the deep unknown over the ocean. As each lantern lifted prayers just weeks prior in Louisiana, so on this day did we find relevant and reverent expression with such a simple communal act.
“Its the little things,” as the country songwriter says. The big stuff is still quite hard, but life is good when the small undertakings deliver meaning. Despite the unpredictability of all this stuff, it seems that we have reconciled with uncertainty. To this degree, Tara has officially hung up her legal spurs, and has dedicated herself full time to the mercurial life of our family and to a new promising career as a life coach. She is happy, and while helping our family without the burden of things undone at the office, she receives much fulfillment in working with and helping others.
A groove is only as long as you keep your mind in the right place. The groove of our past life is long gone; but then again, looking back, I am not sure if my mind and heart were as present then, in the “predictable world,” as they are now in the midst of unpredictability. What is predictable anyway? Today, it is the face of three brothers who love each other dearly. It is communion with family and friends who understand (Brennan and his brothers have been to a magical new place, that they have never experienced and with limitless and timeless folly, even for a week.). It is the caring nature of my wife who takes true care of me; and it is the loving glance of a soft little hand, that will hold mine as we return home with gratitude for the miracle of this summer. We are in uncharted territory, but our ship seems righted and pointed in the direction of some place beautiful. For this greater journey, as the little hand reaches out for mine, I reciprocate, holding it firmly; and steadfastly accept his smile, as a flower receives the morning light.