Posted on March 11, 2012 by Turner Simkins
“We stand alone together. “
“I just thank God for all the blessings.”
– James Brown –
Gasping atop the steps leading from the Mississippi to our home-away-from home atop the bluff in Memphis, the remaining warmth from the setting sun cascaded itself around the gigantic steel girders of the railroad bridge in front of me. Looking up, it was blinding. For a few seconds, the bridge’s silhouette was burned into eyes, as I closed them and covered my face with my hands. It dawned on me that I may have just finished my last run along these banks, as a regular-quasi-Memphian, and began walking home along the path atop the bluff. Thinking back to the countless times I made this same walk home, exhausted, but each representing a different point along the full spectrum of human emotion, from sublime fear to tearful gratitude. For this walk, I walked among the latter part of the scale. The sharp black and orange image of the bridge remained sharply fixed. Closing my eyes again, I could see the entire image; a traverse across one of nature’s mightiest forces, made by man and overcoming what was once impassable.
As the picture faded, my eyes opened to a hillside of daffodils and azaleas in bloom amidst a swirl of leaves from last fall that have yet to be cleaned from the path. Everything about this day, and indeed this last trip to Memphis had been baffling beautiful, surprisingly difficult, and reassuringly good.
I make my way back to the little house that has provided such a comfortable haven for us for the past almost three years and recognize a group of runners who’s paths I have crossed before. It is February and everyone is in short sleeves. The mingling of fall leaves with the promise of the coming spring flowers reveals a season that does not know its place. Its neither winter nor spring and almost does not make sense. But it was there. It was beautiful and I am grateful.
We started our journey to Memphis for Brennan’s first annual physical, representing the first anniversary of the fourth bone marrow transplant. A milestone in its own right, as one year ago, while fervently praying for this day, there were times when it certainly looked like the wrong bet. Fortunately, the common thread holding our faith together has been consistently woven by the one little boy in our house who happens to represent the best that life has to offer, emanating love and courage at all times.
It was for Brennan that we felt it a good idea to accept our friend’s, Reab and Shell Berry’s, invitation to stop at their family home in North georgia on our way to Tennessee. Being one of those new fangled teacher-conference weekends, we found ourselves with a four day’s of no school. Tara and I saw it as an opportunity to complete a circle that had been left painfully unsecured since our last visit to Nacoochee over two years ago. Our last trip there had also been with our friends. But it was a weekend designed by friends to help relieve our minds of the seemingly hopeless sentence carried out by our doctors in Atlanta, who had declared that there was nothing left to do for Brennan but let time take its course.
That first trip was beautiful in its own odd right. The fall weather had been perfect and the children, all innocent to the anxiety we were feeling about the road ahead, played gleefully for what I thought was, potentially, the last hurrah with all three of our children together. That weekend occurred at the time of a crucially pivotable, and even miraculous, decision to take Brennan to St. Jude. But at that time, the decisions had not been made and the heaviness of what appeared to be an almost certain death sentence overwhelmed me almost constantly. I will never forget the weight of that blanket, at that time and for at the seemingly countless other times that it was cast upon us.
This trip, however, we were returning for what we prayed to be a positively eventful trip to Memphis. There was no weight, just the opportunity to return to a spot that had once been unfairly painted in doubt and foreboding. It was our intention this week to return with positive intentions, to whitewash old feelings with affirmation, reaffirming the place as that of inspired perseverance, not for the dark clouds cast over that time and place.
These were our intentions that weekend. They appeared to be realized as a matter of fact upon our arrival, as the boys all took off together with the Berry kids back to the same routine that kept them all enraptured in the fall of 2009, exploring the forests, playing army in the woods, talking about bears and making plans for extravagant trips to the candy store in the neighboring village. But the feelings were galvanized the next day, not by the kids themselves, but when we all toured the Easy Company 101st Airborne museum in the town of Toccoa and all made the trip to the top of Mt. Currahee. The men we can to honor and study, had been etched into our minds permanently due to Brennan’s fascination with the courage of the WWII soldier; particularly these, who were forced, over and over again, to lead the way through seemingly hopeless circumstances. “Currahee,” is Cherokee for “Stands Alone.” In addition to being a brutally fixed component of the Airborne’s weekly training regimen, as these men ran up and down the steep three miles of that mountain over and over, it became their motto. And on this particular saturday afternoon, the boys stood atop Currahee, proud and happy, almost as much as their parents who could not have been more emotional in feeling the significance of the opportunity for all of these boys to eventually stand there alone, together.
It was truly a meaningful weekend, finishing a circle that deserved completion.
Once in Memphis, though, a long week lay ahead. Brennan was booked to the gills every day with tests for every conceivable body and organ function, in addition to the standard tests for residual disease, GVHD, nutrition, etc. One of the first appointments of the morning was nutrition, which revealed that he had lost a full kilo since his last visit three weeks prior to. At the meeting three weeks ago, he also had lost weight, and it was made clear that, with Brennan’s increased activity and energy, he was beginning to burn more calories than he was taking in. The conclusion at that time was that Tara and I were to increase his g-tube feeds a a means of supplementing his caloric intake. Indeed every night since, Tara and I had prepared a full 500 ml bag of tube feeds, which were administered to him while he slept. We were feeing pretty good about what he was eating; and, in combo with what we were doing supplement-wise, felt positive that he was demonstrating some weight gain for the annual check-up. There was A LOT of emphasis put on his nutritional issues during that last visit; consequently, Tara and I felt that it would be a decisive matter during this evaluation, potentially affecting both his future medicinal regimen as well as his lifestyle restrictions.
But about two weeks prior to arriving, he started showing show GVHD-like digestive issues, manifest primarily with almost hourly bowel movements. consisting of very odd looking bowel produce.
While Tara and felt as if we had done what we could for him in order to get his weight headed in the right direction, the first thing we discovered was that his weight was down from the last visit (which, again, was down a full kilo from the visit prior to that.). The nutritionist and I discussed that the feeds he was taking in were so elemental (Vivonex is essentially a predigested food supplement made for “preme” babies) and therefore may have been too elemental for him at this stage.
This was the primary focus of that day, which effectively consisted of a more-than-comprehensive panel of blood work, capped off with the medieval style phlebotomy towards the end of the day. Ultimately, they made a decision to prescribe a more substantial nutritional supplement to see if we could help his digestive problems. We were given one can of the stuff and asked to test it overnight.
Help them, we did not. Affect them… we were right on target.
Falling asleep with B around 9:30, he shot out of bed at 11:30 or so and screamed, “I need a bucket!” Barely reaching him in time, he projectiled a straight shot of pure feeds into the waste basket and all over himself. I managed to unhook the g-tube feeder/pump and get his pajamas off while he sat him the nasty stuff crying when he then jumped out of bed and ran to the toilet to retch again. When he was through retching, he turned around and sat down for about 20 minutes trying desperately to relieve himself of the monster that appeared to dwell within his little digestive system.
As he sat there, I spread out clean towels on the bed and got him some new pajamas when he turned around to dry heave the other way. And so it went for an hour or so.
Tara woke up and concurred that I call the hospital. I reached the medicine room, which is the only outpatient portion of the hospital open 24 hours, gave them Brennan’s name, patient number and told them what was going on and that I would be brining him in. The new staff person on duty said, “I need to check with the attending physician before you can come in.” Knowing full well that Brennan’s medical records, not to mention his reputation, would eventually open the door, I told the nurse, “Great, you do that and I’ll come right over.”
He was provided IV fluids until he calmed down a bit, but the remainder of the evening and the next morning were consumed with retching and emergent dashes to the toilet. Holding my arms around his fragile little body as he rested his sleepy head on my shoulder as he has done so many times, I could feel virtually every bone in his back and shoulders.
I do not mean to belabor this detail; however, as the week progressed, and indeed every day since, it remains the only conspicuous issue that he is facing. After that long night, he was again put on IV fluids until he stabilized, thereby putting off the myriad list of procedures and tests off by a day. But by the time we left that Friday, everything evaluated, leukemia, GVHD and post transplant-wise, revealed a patient who was once again pushing the envelope of miracles.
His pulmonary function test was the first real examination that Tara and I approached with a reserved degree of trepidation and uncertainty. A year before, he tested at 60% of normal level. Indeed his pulmonary function had been compromised to such a degree that it represented the most contentious issue with regard to his qualification for a fourth transplant. We were told at that time by the examiner that it was not unusual to see this in allogenic transplant patients, and that many never recover. On this day, however, Brennan tested at 100% of normal function.
The gut issues subsided to a manageable degree as the week progressed and the IV fluids were stopped. And while he still was not feeling good in this particular area, this problem was eventually eclipsed by more good news with regard to virtually every test conducted. His bone density, which had been suffering due to osteopenic side effects from the chemotherapy tested “normal.” The MRI testing of his vascular function… “normal.” Chimerisim (again, the ratio of donor cells to his own) was 100% donor cells. And by the time we arrived home, the MRD analysis from his bone marrow biopsy revealed zero leukemic cells, even at a microscopic level. At the risk of boring the reader with the myriad details underlying the myriad of tests for which he was subject, suffice it to say that he nailed it (meaning everything).
The team at St. Jude has learned not to take Brennan for granted. He has defied every odd, surprised every expert and overcome so many seemingly insurmountable obstacles that, once again, when the results were all in, he had every one shrugging their shoulders in delighted bafflement. In the case of all transplant patients and their annual assessment, their is one final examination and meeting with the endocrinology team to establish a new baseline with regard to his essential physiological development (metabolism, sensory perception, and basic chemistry of the human body). Quite simply, everything seemed to be in order, al least when we left.
So with exception given to the digestive issues he had been experiencing, and which were unfortunately pushed beyond their limit that particular week, Dr. Leung met with all of us to map out an exit strategy that would effectively categorize Brennan as a success story.
“So Brennan,” he said, speaking to him as mentor to a prize student who was moving on to bigger and greater things, “how would you like to go back to school and be with your friends? Does that sound like a god plan for you?”
Brennan beamed, with a look revealing as almost as much astonishment as Tara and felt inside. “I want to do that more than anything,” he said.
“You know most kids are trying to find ways not to go to school and you are telling me that you are excited to go back,” he said. “Yes sir,” said Brennan with a smile.
“Well then I think you should go home, and assuming that we can wean you off of these medications over the next 30 days without any surprises, that should be your plan. It is time for you to be with your friends and to start showing your buddies how good of a golfer you plan on becoming.”
“Does that mean he can go fishing after this?” I asked. “Sure” said Dr. Leung. Looking at Brennan, he said, “I see no reason that by spring break you should not have to wear that blue mask over your handsome face wherever you go.”
The terms of the deal were pretty simple; wean him from the nasty steroids and dangerous immune suppressant medications over the next month. With no symptoms of GVHD, he would be free to eliminate the mask, eat normally and begin re-assimilating himself into life as a normal (guardedly normal) kid back home.
With regard to the digestive issues, Dr. Leung told us to stop the g-tube feeds and to simply give his body an opportunity to reestablish a normal nutritional cycle, eating when he is hungry versus, pumping nutrition into him at odd hours of the day (i.e.: when he is sleeping). “The body is designed to get hungry, and it may take a while, giving him small meals throughout the day as an infant is provided regular opportunities to eat a little bit throughout the day. He may even lose a some more weight, but time will take care of him.”
Tara, Brennan and I walked out of the hospital in quiet astonishment. We could not wait to break the news to the brothers at the end of their school day at Maria Montessori (and what a better place to break the news than in front of all of our new life-long family of friends who have played such a vital role in all of our lives over these past three years).
We crested the bridge to Mud Island on what was now a sunny warm spring-like day in February. The mighty river heaved in pulses of gentle waves and swirls, swiftly on their path to home in the gulf so many miles downstream. A barge weighted to the limit was slowly making its way upstream, exerting every bit of energy within its capacity to find its destination beyond the forces of resistance that both defined its path and constrained its intentions.
It was Ash Wednesday. And after a gloriously carefree afternoon of children playing carefree, without any preoccupation of worry regarding our next hurdle, high-fives and hugs were concluded with sincere yet equivocal plans to meet again in the future.
The suggestion that we make the 5:30 service at St. Mary’s church near the hospital for the Ash Wednesday service was accepted by all three boys with unusual elation affirmation. For me and Tara it was yet another non-coincidental coincidence, that aptly established the appropriate spiritual portal for our journey home the next morning.
The astonishment and gratitude surrounding our feelings about this day were blessed with a certain degree of clarity, as we all quietly sat through this service marking the official commencement of a new season of preparation and reflection. With such pronounced fear and uncertainty surrounding our lives one year ago (or even this past Fall), we, like the cycles of life and the seasons of this world, had clearly come full circle. Such intense experience is not easily mitigated by time, particularly with everything still so tangibly real about what we had just learned, where we were and what we were now focusing on. The liturgical season of contemplation, where one is asked to assess what has happened in their lives and how their intentions can be directed towards yet another opportunity for rebirth, had fallen directly on our heads and in our hearts on this day that seemed so improbable, not just last last year, but just days before. The priest aptly reminded us that the season is not about sacrifice but the lessons taken from changes in life. How many lives have become intertwined with ours which have delivered us this opportunity to leave this place; and this service, prepared to fully recognize that the gift is not something new, but something which we hold at all times.
The children for whom we have grieved and for whom we continue to pray; the ancestors whom we never knew but who’s lives still find sanctuary in our lives; the friends, doctors and counselors whose sacrifices and love remain fixed within hearts; they all represent treasures to keep as we continue down life’s path.
Arriving back in Augusta, the Lenten Rose in our back yard was once again in bloom, now a fixed annual reminder of the spiritual struggles we have faced over the past three-plus years and will face as the seasons turn over and over again. It bloomed the first year of Brennan’s illness. It blooms today.
A frightening storm had passed our home just hours prior to our arrival that evening, and had stirred up even more dregs from the season before, mixing dead limbs and leaves from last spring among the new life that was emerging from this one. The new season, beautiful and new. The old season, with its degenerating physical presence feeding the hope and intentions that lay before us this day, may not be as it was, but it lives within us.
Now home, the weaning is underway. So far so good with regard to the gradual removal if his immune suppression medications. This, of course, will be the ultimate test as to whether or not Brennan indeed will soon reintegrate himself as a semi-normal ten-year-old back home. The gut issues persist, however. Tara and recently I had been worried to the extent of both calling our medical team here in Augusta as well as considering a trip back to St. Jude.
Fortunately (in a manner of speaking), we recently discovered that the blood-work associated with the endocrinology test on his last day in Memphis showed that his pancreas was virtually not functioning, thereby defining what is most likely the primary reason that he is still unable eat regular meals and why he still suffers from very painful digestive issues. New pancreatic enzymes have been prescribed, which he has just started taken, and are intended to jump-start his pancreas and to hopefully allow him to realize the normal nutritional cycle predicted by Dr. Leung.
Do we worry about it? Certainly. But we also know that the residual affects of his disease and treatments are unlikely to every just go away (But with Brennan? Who knows?). Either way, he has taught us to take the best from our experience while recognizing that our intentional gratitude for the moment is imperative as we prepare for whatever the next season has in store. Spring will create fresh new leaves of summer, which will in turn, in blazes of colorful glory, hold on until the wind frees them of their physical shackles and delivers them back into the earth. We just happen to be in one of those confusing, but promising in-between phases that will change.
Brennan told me the morning after we arrived home, “you know daddy, I am glad that I get to go fishing again, but I really want to be back in school more than anything. I love our days together, but I really want to be with my friends.”
I love our days together too. For me (and Tara), splitting our time between work and days with Brennan at home has been one of the most wonderful gifts of my life. One way or another, though, these days too will change and he will be free to share his life and his spirit with his friends he has known and and the children he is yet to know. Full circle. Its been a powerful lesson.