Posted Feb 13, 2011 11:47pm
We must be willing to let go of the life we have planned, so as to accept the life that is waiting for us. – Joseph Campbell
Watching your son at the free throw line. Not much at stake other than Nat’s pride. His team is down 23 to 15 with 35 seconds or so on the clock. As he twirling the ball in his hands backwards, composing himself before the shot. Dribbling the ball as he focused at the basket I did a quick calculation in my mind. “Wait a minute, Nat has seven points so far and he told me before the game that he was going to score eight today for Brennan. This does mean something.
Its funny how many dots the mind can connect on matters relating to chance, fate, destiny. With Brennan on my mind constantly, and trying to direct every ounce of spare energy I have to him and his capacity to keep fighting, the most mundane matters and often silliest of notions will trigger thoughts about cause and effect. As much as I pray, as much as Tara and I refuse to make any decisions regarding Brennan’s care without looking under every stone well past the point of redundancy, it is quite common to ind my mind wandering to the most senselessly obscure places of little, if any, merit.
Alone in the car it can drift for miles. Somehow the very arbitrariness of my prospect to make a traffic light teetering on yellow generates the capacity to determine the entire shooting match.
A stop-light; one more push-up; a twisted crap game involving my 25% chance of picking the correct bottle of pills from my dop kit; meaningless self imposed pressure in completing a song on the guitar error free; a basketball flying through the air in a pee-wee basketball game already decided.
The ceaseless awareness of life’s relentless fragility. A boy who deserves to feel every ounce of love produced on his behalf. But for his suffering and pain, his life like the rest of ours teeters in the wind, with no more or no less certainty than I can muster when the ball rolls from Nat’s palm, rotating silently towards its goal, no longer the subject of will elicited.
The silence of anticipation is shattered by the eruption of cheers as Nat’s ball swooshes through the net. His uncanny ability to focus at his age, to place pressure on himself for the purpose of honoring others, to truly believe that a little extra effort on his part can help someone else… he’s just eleven, and has a great deal to learn before he goes out into the world on his own. He has no idea but, if you ask me, he already has the hard part figured out.
For twenty one days the Brothers and I were separated from Brennan and Tara. The Parvo virus Christopher picked up at school demonstrated its last signs of being symptomatic on January 16 (Christopher’s birthday). As we toppled into the realm of quarantine on this day, birthday celebration plans for the rest of the month toppled like dominoes. Brennan’s birthday on the 23rd, Tara’s the 31st were all celebrated over the phone.
Likewise, the transplant itself (an event no less sacred than childbirth) on the 25th took place in room 9 on the transplant unit with only one parent to hold his hand; fortunately, the one who’s cells were giving him yet another chance at life. The extent of my participation was limited to Tara calling on the phone and allowing me to listen in as the deed was commenced. While we remained coupled through prayer and constant focus on Brennan, not being with him was hard, very hard.
Parvo, or fifth’s disease, can be catastrophic in the realm of bone marrow transplantation and immune deficiency; consequently, Brennan’s team ordered the 21 day quarantine not because of Christopher, but because both Nat and I could have been potential carriers. Fortunately, before all of this was ordered, Tara and I made a very deliberate and outspoken decision to request help from our family members as we dove into transplant number four.
Brennan had been so ill during the months of December and January that he required constant attention. Between the shuffling of holiday living quarters, almost moving out of Target house, daily life in the medicine room and two hospitalizations for fever, not to mention the whole decision to press on or move back home, we were physically and emotionally spent. As Tara and I thought through what lay ahead of us with a fourth transplant we finally cried “uncle.” Indeed we called much more than uncle, inviting both sets of grandparents, aunt susie, aunt Martha, uncle Frank and Aunt Kay, and two close friends were scheduled for a rotation in Memphis, for the sole purpose of helping out with the kids and at the hospital. Once the parvo virus shuffled things around, the de-facto delegation for the Brothers fell under my command; Brennan with Tara.
So, as presumed carriers of the virus, the boys and I became totally off limits to anyone coming to help out with the hospital. We joked that the temptations put forward by our proximity to everyone, particularly with regard to the boy’s basketball games and after school activities or even just a hug from the brothers, represented a venture to “the dark side” with no opportunity for return. Scheduled visits from friends and relatives who help with Brennan therefore rendered very brief visits with the Brothers, and only at the tail end of every trip.
After Tara’s cells were harvested and transplanted to Brennan over the 24th and 25th, our communication with Brennan diminished by the day. At first, and indeed for the first week, he was actually all talk. We had been told by Dr. Leung that whatever virus Brennan had fallen victim to with regard to the last pre-transplant hospitalization would most likely be wiped out by his conditioning chemo (Napalm in lieu of round-up. It get’s the job done.). Therefore, for the first four or five days post-transplant Brennan was a champ, talking to me on the phone daily and willing to participate in Skype sessions with me and the Brothers. Everyone who was able to see him during this period of time was blown away by his strength, good humor and bright spirit. But then things started kicking in.
Twenty one days goes by pretty quick for most of us in the 21st century world. But for someone who is accustomed to consistent contact with his family, its a long time. I had never been away from Tara for more than a handful of days (Swannanoa probably representing the longest stint) and have certainly never been away from the boys that long either. One can’t help but gain an appreciation for the many people who for whatever reason are separated form loved ones for extended periods of time. For me, though, it wasn’t the time it was just the unexpectedness of it all. For the first two weeks, it was the overwhelming sense of being alone during the day. Dropping the boys off ay school I would return to the house to assume my duties as Haus Frau, doing laundry, dishes, and stocking the fridge, etc. The gym has always been an outlet for me these past two years, but particularly during the first two weeks in quarantine. Pushing myself a little bit harder, more for the purpose of killing time than getting stronger. This included even taking up Tara’s Bikram Class for a few days, the ultimate means of letting off steam.
On the spiritual side of things, every morning was dedicated to devotional prayer. I became a regular at a noon mass held weekdays at St. Peters in downtown Memphis. The small congregation of regulars includes only a handful of people, representing a few businessmen from the downtown area, two or three elderly couples and a handful of regular homeless people who attend as much for the hour of being indoors and out of the cold and the opportunity for a little Christian charity. I also played my guitar.
Improved stillness. Focused patience. Attributes which have evaded me for most of my life now stare me coldly in the eye. “What are you going to do?” The little voice in my head asks me with impatience after the solitude of mid-day mass is broken by the freezing rain as I shuffle down the icy sidewalk. “Were you listening to the readings?” “Let go. Stop controlling. Start trusting. Let go, listen, trust. Let go, listen, trust.”
For someone who’s mind is accustomed to extraordinarily high rates of speed, listening to the heart takes a great deal of practice. Trusting, well that’s “a whole nuther” domain. I honestly believe that the time away from Tara and Brennan must be seen as a gift. An opportunity to size myself up; a sort of spiritual audit. An out-of-balance balance-sheet remedied by stillness of mind and openness of heart.
A week or so before the quarantine I was walking out of the Target House when Miss Joe, called me over to the front desk. “I need to talk to you,” she said with a stern look. Miss Joe is the reigning matriarch of the Target House, delivering all residents and visitors a strong dose of sweet, southern, maternal authority. “Listen to me,” she said with a squint, “You need to smile. Those boys need to see you smile. I know you are having a hard time of it, but you are losing it and need to pull it together.”
I stood there for a second, staring back while my mental turbo chargers replaying a dozen or so scenes of me shouting when I should have been listening, stern when I should have been lenient, critical when I was the one deserving criticism. With a cold slap in the face, I said “thanks.” It was all I could think of as a response. I walked out the door thinking, “you know, she’s right. You’ve been at this for two years and haven’t learned a dam* thing. Get with it.”
Driving off, teetering on the edge of beating myself up, I recall numerous instances of this same lesson with an equal number of failed efforts to grasp its’ intent and, therefore, its meaning. In the most delicate of circumstances, the heart’s intuition should always prevail over the ego. When challenged for its presumed position at the helm, the mind fights back. It is a role assumed more often than not, and most often for valid purpose; but is this its natural post? The ultimate malefactor amongst its triumvirate brethren, heart and spirit, it is challenging to restrain. In my case, I don’t know if it can be muted fully; but, driving to pick the boys up at school that afternoon, my mind somehow slid into the backseat and the heart started to take its rightful place in the driver’s seat.
But for these circumstances of separation and, therefore, extreme personal reflection, I arrived smiling and grateful for my little motherly reprimand. For crying out loud, I am sitting here with the opportunity to be sole caregiver for these two fantastic boys for three weeks. Take advantage of it.
This whole thing is certainly not about me or any one of us. Its about the family, the Brothers, and indeed the collective union of souls which include every heart that has opened for Brennan and the countless children fighting this fight as a result of his experience. Singling out personal fears, or indeed strong emotions of any nature towards one member of the group over another can shift the ballast to the point of imbalance and instability, particularly with one boy out of three in dire need of care.
Needless to say, despite all of our efforts and the often exceptional boot-strap style achievements of the Brothers over the past two years, Brennan has been the focus. Our 21-day exile was slow to evolve in any constructive fashion, leaving both me and the other guys feeling suddenly amputated from the family corpus. This sensation was amplified tremendously by the gulf segregating them from grand-parents, aunts and uncles who were here in Memphis but forbidden to visit. Not exactly the ingredients for an assured sense of one’s place, but as the days wore on with regular communication with Tara and Brennan, via telephone, Skype or otherwise, we still felt close and managed not to dwell on it.
The boy’s basketball schedule was a major blessing, offering us something fun and exciting to do with our evenings for at least a couple of nights a week as well as every Saturday. Free from worry that Brennan would be jealous of their doing things that he could not, they were able to spend more time with friends with much more freedom of movement that they would ever achieve with their parents oscillating between their roles as a St. Jude parents and otherwise.
There was Christopher’s birthday weekend, spent with friends from school at the movies and a Grizzlies game on MLK day with his friend Patton Shaw. Nat had a sleep over for his friend Graham Boswell’s birthday, where an entire horde of boys were given temporary dominion of the student center at Rhode’s College. Bellied-up with their root beer and pizza at adjoining tables to the college students themselves, they shot pool, played air hockey and foosball, ultimately running themselves ragged in the gym before falling out, pajama-less, in front of the TV.
So, while desperately missing Brenny and Tara, the boys and I appreciated our small window off freedom, knowing that it would be short-lived and that we would soon be traveling Brennan’s path at his side where we belong. Every day with the boys my appreciation for each one of them, for their unique personalities, for their singular capacity to express their own feelings, their own little sense of humor, their own fears. Sometimes, with one kid literally demanding everyone’s attention, changing channels to focus on the less critical remarks pertaining to what someone over-heard or what someone wants to do can be difficult. Our slowness in adjusting to a daily routine without Brennan was commensurate with the counteraction in appreciating the other guys for who they are and nothing else. We’ve been dragging them from here to there so many times over these past two years that its easy to overlook them for who they are, irrespective of how well they are handling the whole cancer-family thing.
Somewhere around Day +4 or 5, my mom crossed over to the dark side for her final night in Memphis. She encouraged me to possibly use some of our remaining quarantine time for an adventure. Maybe a train ride to New Orleans or even Chicago. Looking at the Amtrak map we even thought about an overnighter to Greenville, MIssissippi (not requiring such an extended period of time on the train) until my friend Ben Hale suggested that a trip to Greenville would be the equivalent of someone from someone from Atlanta taking a vacation to Macon. I thought a train ride sounded somewhat like a romanticized father/son means of traveling when Nat spoke up and said, “why don’t we just go home?”
Sounded like a good idea to me, Not knowing when we would have another window open up, and knowing that both sets of grand-parents could be seen at home (while off limits in Memphis) I was soon on the phone and managed to secure two big-time favors from two big-time generous friends to both pick us to and return us back from Augusta, allowing us the maximum possible time at home.
I called Christopher’s second grade teacher in Augusta, Ellen Hoffman, and discovered that the week of January 31- February 6 was Catholic Schools of Excellence Week. This opened the perfect little window for our trip home, offering an open-house wednesday and a First Friday Mass for two special visits at St. Mary’s. Further reconnaissance work established that Berry, Bachelder and Morris boys, were scheduled to be home.
Nat, however, wanted to make sure that he would not create any ill feelings with Brennan by going home when Brennan could not. The week prior to, Brennan was as strong as he had been in weeks. Despite the conditioning chemo, despite the fact that he had just received a double dose of cells from his fourth bone-marrow transplant, he was on the ball. With sharpness of mind and the purest sincerity he told Nat over the phone that it was ok with him for us to go home. So it was done.
We barely made it out of Memphis that Tuesday morning, with a brutal winter storm literally upon us, we jumped aboard the last flight out of Olive Branch, Mississippi on Tuesday, the 1st of February. It was raining sideways, but thanks to the patience and kindness of a friend who’s business was in our neck of the woods anyway, we made it home. Had we waited another 15 minutes, we would never have seen Augusta, GA this winter.
But home we came, and plans we made. Every night was a reunion with the boys from the old neighborhood, whom we hardly left for four straight days. Fortunately, with the St. Mary’s events during the week, and a sunny day predicted for Wednesday beckoning golf after the open house, we kept ourselves plenty busy until the other guys got out of school. From 3:30 until bedtime, Gardner Street looked like the location for a “Lord of the Flies” dress rehearsal. Nerf-Wars, skateboard challenges, football games, basketball games, cook-outs (rain or shine). They were home.
Christopher managed to work up the gumption to make his first reconciliation that Saturday. With the help of some cold rainy weather, and the flexibility of Father Jerry Ragan and Ellen Hoffman, Christopher proudly donned a collared shirt Saturday morning in a significant effort to take the first step towards his first communion, a matter which he is quietly, and hopefully, looking forward to pursuing with classmates in Augusta later in the year. Nat had left for the day with Mimi and Pat Pat to attend a UGA basketball game, so Christopher asked that Ms. Hoffman and Nonnie be there to see him slip behind the curtain, presumably as a more credible witnessed than myself; but, this was a big deal. No one pushed him. He knew his classmates back home had prepared for theirs. But he also has repeated to us over and over how much he wants to have communion with his brothers.. all of them. It was a cold rainy, beautiful day. The only thing missing was Brenny.
The reconciliation was timely for me too. Since wednesday of that week, I was slipping. The tug of war was back on, allowing the senses to pull me in many directions. It all happened Wednesday when we received word that Brennan was back in ICU.
Our planned game of golf on wednesday afternoon was as much for Brennan as it was for us, although I admit having been away from the course since November, I was pretty eager. Nat, though, was determined to have a great round “for Brennan” and already rehearsing how he was going to tell Brennan about his record round upon return to Memphis.
It was a clear day, crisp and almost cold. Augusta, like Memphis, had experienced its share of foul weather this winter, so the little window of sunshine on Wednesday was yet another take-it-or-leave it type gift that we had to jump on despite the borderline temperature conditions.
It was around 2pm. As we migrated over to the practice green, Christopher started acting peculiar. He suddenly became very teary about everything, whereas ten minutes earlier he was boasting about every shot he hit on the practice tee to anyone within ear shot.
Bordering on making a scene, he was getting angry, yelling at me for wanting to play golf with Nat and not wanting to be with him back at the house. He stormed off to the clubhouse, where I pulled him aside and, beginning to brew a little temper of my own, I gave him a little talk about expressing himself to me but not to the everyone else in the world, erring on the stern side about golf etiquette and consideration of others.
Despite the blue sky, a cloud settled over our little group. Christopher and I pouted our way through the entire first hole, watching Nat play by himself while we sat next to each other in the golf cart quietly wagering who’s will would break first. I was fuming too much to play, and he was not about to cave in to “mean old daddy.” Nat, on the other had, quietly played his game, pretending not to notice the side-show.
Sitting in the cart at the 1st green, waiting for Nat to finish up, I found myself suddenly spellbound, stared through the shrubs and briars between the immaculate landscape of the country club and the grounds of a beautiful little African American cemetery separated from the course by a rusted chain-link fence. I was looking at the Northeast corner of the graveyard, noticing the sparsity of headstones, and a few that had toppled over.
It is about in this location where Molly Aaron is buried. Molly worked for my parents as a nurse to me when I was a baby, serving as a housekeeper, sometimes cook and chief ethical officer for me and my siblings until she died in the late 1980’s. We think she was 105, but there is no record of her birth. She could be as stern as boiling water and as beautiful and kind as a child herself. I remembered my mother recognizing soon after her funeral that she had no headstone. Mom took it upon herself to pay for a beautiful granite memorial for this lady to whom I render unfeigned credit for most of any compassionate attributes I have today.
She was a powerful force in my life. I had been to this place a hundred times before, but never affected like that. Something was going on.
As I turned around, I noticed that Christopher had left the cart and was sprinting back to the club-house, up the 1st fairway backwards. Fortunately there were no other golfers coming as I raced back to collect him.
He stopped in his tracks and cried “I am sorry daddy!” and then jumped into my lap and cried. Turning around, Nat was walking to the second tee box with his head hanging low. “I really wish you guys would stop and play with me,” he said to both of us. “We came all this way.” And with what seemed like a wash of fresh cool air, Christopher looked at me and said “ok.”
I didn’t know what was causing the wave of emotional turmoil and reflection that overcome both of us for that flash of time, but as I walked up the hill to the next green, I noticed a golf cart driven by someone official coming straight up the hill to me. I knew I was getting ready to find out.
It was a new assistant professional who started working sometime since we moved back to Memphis. “Mr. Simkins, I hate to bother you, but your wife is trying to find you. She says its an emergency,” he said.
My cell phone was in the car charging, accounting for Tara’s inability to track me down. Waving the boys to get in the cart so we could leave, they all stopped and looked at me with worried, puzzled looks. Noticing my predicament, the pro said, “I have a phone if you need one.”
I still feel somewhat embarrassed, putting that kind fellow into a position have to listen to what he listened to. but as Tara answered immediately after one ring, and hearing the peeps and bells associated with multiple monitors in the back ground, I knew where the conversation was headed and started welling up.
“Turner, I am sorry,” she began, “but Brennan has had a difficult night and day breathing and needs help, We are at that point now so I need you to tell him that you love him and that will see him soon,” she said, clearly trying to give me enough information to understand what was happening but not wanting to reveal so much that she upset Brennan.
His labor-some breathing from the night before, she recalled, was reminiscent of the pulmonary edema episode from November when he was intubated in ICU. On this day, as I stood on top of this hill with my boys staring up at me agape, I could barely hear Brennan saying”I love you daddy” through what sounded like a wind tunnel. I envisioned an oxygen tent from the old days, but later learned that he was breathing through a full facial mask that was pumping high pressure H20 into his lungs. As with the last ICU episode, his lung capacity filled with fluid in a short period of time, putting him into a very fast and dangerous tailspin. Tara told me later that he managed to squeeze out the words between forced and panicked gasps for air, “today is the hardest day of my life.” It was not much later that he was whisked to ICU.
“Can I rush home to get my computer and tell him I love him on Skype?” I asked knowing that I could be home in less than ten minutes. “No” The doctors say we have to move now.”
With tis, I waved the brothers up to the top of the hill so that thy could tell Brennan that they loved them. They could not hear him talk back, telling me all they could hear was “the wind.” Before we hung up, Tara got back on the line to assure me that this was not like “last time,” but was simply a bridge, delivering rest to a body that was working overtime x 100. At that time, it was hoped that he would be intubated for only a couple of days. I told her I loved her and handed the phone back, fighting tears and wondering if the boys and I just said goodbye to Brennan on a borrowed cell phone.
So there we were. Large white clouds had crossed the horizon since we all started, heralding the storm that took charge for the remainder of the week. But for the time being we stood on top of this quiet place, probably one of the highest spots in all of Augusta, looking out over the horizon, watching the new clouds pass over head in the cold wind.
With disruption of our little universe now realized, we held each other. Before I knew it, we were kneeling on the ground praying together. We stood up as if to say, “what next?” It was all so surreal. Nat looked to me and said, “we can go home, but I think we should play golf and al make our best scores for Brennan.” And thats what we did.
Christopher played for only two holes, but became the most cheerful and pleasant little boy you have ever seen. Nat was driven to make par. Then birdie. He played great. And as a matter of fact, I did too. It was a very strange experience.
I knew that if we were in a critical life-or-death phase, that I would be summonsed to Memphis. I tried hard to to get that thought out of my head. Letting go and staying at the golf course proved to be the right thing, When we got home, Tara called to reinforce her previous comment that the “vent” was truly a bridge; but, most importantly, and surprisingly, Brennan’s peripheral blood chimerisim test showed that his immune system consisted of 100% donor cells (100% Tara…. go mommy!). Talk about a mixed bag of news. One hundred percent donor cells, less than one week from transplant. Wow.
As the week wore on, everything was driving my heart back to Memphis. Walking through the house on Gardner St, looking at Brennan’s things. Watching movies we all used to watch together; finding some of his clothes in the dryer that he loves to wear. Conversations with friends. Visits to to grandparents homes. We were home, it was all good. But things were dire with Brennan and I could think of little else.
Our flight back to Augusta was scheduled to leave at 10:30am Sunday morning, once again representing one of those serendipitous small windows allowing us to get from one place to the next. The three days prior to were socked in with wall-to-wall rain, and the next several days in Memphis were scheduled to be nasty. The fates were bringing us back at just the right time.
Saturday night, as I paced about my parents place along the Savannah River in South Carolina, watching Christopher and his friends have the time of their lives, playing army man, shooting bb guns, sitting around the camp fire, I could think of nothing else but getting back. An abbreviated conversation with Tara told me that things were not exactly going splendidly. “Just get back as soon as you can,” she said, trying her best to sound confident but clearly her fear was breaking through. She was getting really scared.
To make matters even more interesting, Saturday was the day that an old friend and acquaintance arrived in Memphis to help. His name is Jim Weathers. I met him at the Masters tournament several years ago where he was serving as the physical therapist for a number of tour players. Helping some of the biggest names in the game, as well as a number of NASCAR drivers, football players and athletes of all kinds, Jim is an ex-Green Beret turned healer, having discovered his his gift in Japan some 30 years ago.
Jim returned the feeling to my right arm some two years after I broke seven vertebra in a car accident. Having performed on me something barely short of a miracle I got to know Jim and learned that he was using his gift of healing, through Reiki energy work, reflexology and massage to help people with many illnesses. Therefore, just after Brenny started his conditioning therapy for transplant number four, Tara and I agreed that we should pursue all resources and contact Jim. The Cowboy healer continues to do his work from long-distance. Why not take a chance with Jim. But knowing that he works almost full time with Phil Mickelson and a number of very high profile people, I had no idea what such an arrangement would require until I called him.
Just before my departure for Augusta, I called and told him about Brennan. He said that if he could touch Brennan, he would know whether or not he could help. Therefore, if I could get him to Memphis, he would stay as long as he needed for no charge. Last Saturday night, Jim arrived. So, hanging up the phone with Tara, feeling less than encouraged from the energy I was both feeling and emitting, I knew that Jim would be there for what was looking like the perfect window of opportunity.
Boarding the small plane Sunday morning, I called Tara to see if Jim arrived and to, hopefully, receive an encouraging report about Brenny. I also saw on my phone that she posted a Carepage. Taxiing down the runway my phone rang. It was Tara calling me back. But just as I answered, the pilot gunned the engines and I could hear nothing.
Trying desperately to plug one ear and listen while bent over double in the crash position, I missed the call. It would be three hours before I knew anything, I stared down over Augusta with my mind racing louder than the twin engines laboring westward through a major headwind. Looking down we passed over Forrest Hills Golf Course, where Brennan won his first golf trophy. I saw Mimi and Pat Pat’s house. I wondered if I would see them again with Brennan. It was going to be a long ride.
Christopher was in the co-pilot seat. Wearing his headset, looking very much like the photo of Brennan in the Carepage photo from some 18 months ago as we flew to Memphis for the very first time. He turned to tell me that his I-Touch batteries were dead. “Man..” I thought, “This is going to be a long flight.” But I said, “Christopher, would you like to play with my computer?” “That’s ok daddy, I’ll just look out the window and enjoy the ride with you and Nat.”
He turned around and grinned at me with his beautiful smile. In his little face, I let go of the whole thing and found peace. We were on the free throw line. The ball was on target and in the air, rotating slowly with perfect intentions. It is past the point of my control. What else can I do but rely on my player’s own confidence, rooting for him for with my own grateful intentions.
It was a beautiful day for a long ride in a small plane. As we crossed the Appalachian mountains, many of the peaks still held snow from the previous week. The boys were quietly peaceful and; while begging to stay home less than a day before, we were all comfortable and grateful knowing that our family would be together soon.
Bidding our pilot adieu, God’s grace presented itself to me with Tara’s call soon after we landed in Olive Branch. “I am so glad you are home. Everything is amazing. Jim arrived late last night as Brennan was at his physical blood pressure limit with fluid retention. When you called me, the doctors had just ordered dialysis for first thing this morning, Three hours after Jim started his energy work, he started shedding fluid. The dialysis machine was actually delivered to the room, but they now no longer need it. Maybe its the medicine, maybe its Jim. But all I can say is that he has turned a dangerous corner and I am so happy and relieved.”
We drove straight to the ICU. Walking into Brennan’s room for the first time in over three weeks, Tara, Martha and Jim were all there. Tearful hugs all around, as Brennan lay motionless in what was unfortunately a familiar position, breathing on the ventilator. Later in the week, I counted thirteen different tubes either directing fluids in or out of his body. There had been five new IV placements in his veins, in addition to the central line. He was puffy and swollen. But he was breathing, and we had made it back in time to celebrate good news.
Jim had been with him for several hours over night and for all of the morning. Not having seen him in a coupe of years, he gave me a big bear hug. “How you doing? You got some kind of fighter here.” he told me straight into my eyes.
Commenting about how swollen Brennan looked, Tara responded, “I am so glad you got here today and not last night. I was really scared,” she told me before I could tell her how scared she sounded on the phone.
“None of his bones were visible through his skin, he had s much fluid,” Jim chimed in. “I had to push through every inch of his body to reach muscle.” Later I learned that he had gained six kilos that day in body weight solely from fluid retention.
“He had slits for eye,” said aunt Martha. “He was so round that he looked like he was going to pop, like one of the characters on a Cool-aid advertisement.”
I thought he looked far from good when I arrived, so to hear these remarks made me realize how grateful I should be not to have seen him the day before. But I could not stop thinking about the coincidence of Jim having started his work at the time that the fluids began to diminish and the blood pressure started dropping.
“This is a remarkable kid. In every situation where I have tried to help someone in similar dire circumstances, their bodies have such a deficit of energy that every thing I can give them is consumed,” Jim said, referring to the time he had spent praying and working with Brennan’s chakra, which is believed in the Hindu religion to be a center of activity that receives, assimilates, and expresses life force energy.
“I placed Brennan’s hand on my arm, not wanting to place too much pressure on his little body,” he continued. Touch is a key element to his ability to feel energy deficits for the purpose of either both identifying which key parts of the human anatomy may be blocked or in someways hindered by disease. “The amazing thing is that, he was directing energy back to me, almost as if he was saying that he was grateful for what I was giving him and he wanted to give something back. I mean, wow… that never happens.”
Dr. Asha Pilai, who was the BMT physician on duty that week was very interested in Jim and our openness in more holistic and spiritual treatments. When she heard this story she told me that as the intubation process was occurring, just prior to the anesthesia putting Brennan to sleep, he grabbed her arm, looked her in the eye and said, “tell my Daddy that I am alright.”
Jim stayed through wednesday morning, working with him day and night, subsisting himself on two hours of sleep or less. First he focused on the fluid issue, then the blood pressure, then his kidneys and finally his liver. For everything that became a critical matter this past week, Jim Weathers was at his side, praying and intently focusing his energy for Brennan’s sake.
I stayed with Brennan in his room from the moment I returned until Wednesday night, when aunt Martha spent the night with him in order to be with him one more time before heading back to Laguna Beach on Thursday.
And the brothers were here every day this week. For the first time since Christopher’s birthday, they were able to tell their brother, although sleeping through induced paralysis, that they loved him. They touched him. As with Jim, he touched them. Christopher was able to take advantage of a stomach bug in his class to spend more time at the hospital than Nat, but we are all delighted to at least have the opportunity to be together for part of the day. The energy exchange had been significant; probably, as Jim can testify, as much to our advantage as to his.
In the presence of such a strong source of love, the mind takes its rightful pace in the rear. The heart takes the lead. In these conditions, peace prevails. Every day this past week, particularly the days before my arrival (post intubation) represented a roller coaster-ride of emotion; fortunately, with gradually diminishing rates of speed. Beginning with the pulmonary edema that brought him here to begin with, transitioning into near kidney failure, then explosive blood pressure, then approaching liver failure, then more pulmonary edema; and then settling back down again.
Thursday night the paralytic anesthesia has been eliminated so that he was able to open his eyes and move. Within a few hours, he recognized the reason for his captivity and established his own means of communicating to us. At first he slowly lifting his feeble little hand into the air, forcing his eyelids to stay open long enough to look you in the eye, then shuttering as they closed. He could not talk, but he was able to mouth words around the vent. “I love you.” “Thank you.” “Bathroom.” “Ice chip.” All represented words we could make out without hearing. The degree of urgency was delivered by the length of his stare or by wider movement of his lips. By Friday, as the vent was turned to its lowest setting, he was in full “yes,” “no”, “maybe” communication, expressed by faint nods, head turns and shrugs. A private language established for everything he needed in a matter of hours. He was on his way back.
Throughout all of it, the BMT and ICU team reacted to every episode mentioned above with the greatest possible sense of primacy and dispatch, bringing to the surface very serious discussion about very serious alternatives with very serious consequences. At the end of the day, they are chalking it all up to “engraphment syndrome.” In other words, with such a radical and fast engraphment period, every part of his body which had been impacted by infection, parasite or general deterioration resulting from the anemia was being affected through an immune response to rid his system of these toxins and restore him to health. With the extraordinary amount of T-cells and lymphocytes that introduced to his system barely two weeks ago, his engraphment syndrome was powerful, and therefore generating a severe, dangerous, but ultimately life saving response.
At one point this week, his ANC was 11,000. How’s that for someone who had been severely neutropenic with zero ANC for over two months. When asking Dr.Leung if such a high ANC was good or bad (a normal ANC is 5,000) the response was that “yes;” indeed, his little body was in such dire straights that we were in other position than to pull out all the guns.
Today, the guns are quiet, but the smoldering consequences of their role in all of this are evident in our little boy who is down to one IV pole, off of the ventilator and talking like nothing ever happened. Yesterday morning, they pulled the tube. Prepared for all of the potential problems associated with pulling a ventilator on someone who has been literally paralyzed for ten days, the ICU team offered high-fives all around when, clear of his breathing apparatus tube, he looked up and said in the clearest sweetest little voice, “can I have some ice chips.” Not even a sore throat. He talks just like he always has. Last time it took at least two days.
Friday afternoon Dr. Leung walked into the room with as close to a beaming smile as he could have. By this point we were scheduled for the extubation Saturday morning and things were all going well. Tara was off with the brothers and I was soaking in the afternoon at Brennan’s bedside holding his foot while Dr Leung stood at his bedside, smiling and staring at his little hero.
“He had ice chips today,” I said.
“What do you mean? That can’t be,” he responded. “I heard the nurses talking about it,” he said, “but I have never heard of anyone on a ventilator eating ice chips. Its almost a physical impossibility.
“You know,” I said. “He doesn’t think about it. No body told him he couldn’t. Just like with everything else, Brennan just believes in himself and does it.”
“Well we all certainly believe in him,” he told me giving me a fist pump as he walked out of the room. “It looks like everyone followed their heart this time and just trusted Brennan. I could not be happier with everything. The fourth transplant was the one that counted. I believe this one is here to stay,” he said with as much confidence he has ever exhibited (which is saying a lot coming for the most confident man I have ever met.).
We walked outside of Brennan’s room to talk a bit more. Dr. Leung is convinced that Brennan is over the hump. Another last minute three pointer to win the game. But this time Dr, Leung is talking like he is not going to let the other team get the ball back. Brennan did it. He trusted, we believed and, God willing, he just may walk out of this place some day.
When the tube was removed, Dr. Brandon Triplett, who had been on staff all week, sweating through all of the kidney, liver and edema issues, told Tara. “I am going to have a tee shirt made for this kid so that he can parade himself around St. Jude’s for everyone to see. The Tee shirt is going to say, “I am why St, Jude’s is willing to do four transplants.”
Brennan is still very feeble. The fluid all gone, he looks like a concentration camp victim. But is he beautiful! With the vent tube and the NG drainage tube gone, he looks perfect to me.
He remains very prone to infection. We’ve certainly learned over the last two years that if it can go wrong, you be better be ready for it. Looking at him this very second, watching his emaciated little hands shake short uncontrollable palsied spasms as he struggles to play solitaire on his I-Pad, fears and doubts sprout from the mind. “He’s so skinny, he needs to get stronger;” “will he actually make it home before summer?” “Will he get strong enough to enjoy the things he like?” Looking down at this little guy in any other circumstances, most folks would be frightened. Despite the uncertainty and fears about long road ahead, (for example, he is still fighting hemoragic cystitis and bladder spams), right now I feel like we just took won the battle of the bulge.
I grab his hand, Close my eyes and cry through the most profound prayer of gratitude my heart can conjure. Brennan has never seen himself as someone who is sick. In his heart and his mind, there is nothing wrong with him. He is just doing what he has to do to beat an opponent.
In my heart and my mind, I know that I believe in Brennan, who without a doubt represents the most profound source of energy I have ever encountered. Trust in him and in his love and there you will find peace. As the passage, says, “Behold, the kingdom of God is within you. God is love.” Not trying to over simply the whole deal, but, if God is Love, and we maintain love in our hearts, then does God not reside within us? Does there need to be anything more than that? Its not about some wrathful old man passing judgment; its about our capacity to receive love and to then to give it back. “God is within us. If you trust in God, you too shall live.” I say this because I am witness to to it; and therefore, am obliged to spread the word. Maybe its just Brennan rubbing off on me. But right now it seems like that’s all there is to it.
But I do not say all of this to in any way imply that his war is over. We still have to pray that this graph takes care of Brennan’s leukemia. We are simply back in the game. But it took a miracle to get back here; and this miracle is the product of a profound source of love; a source that inspires doctors, encourages prayer, feeds hearts, and continually inspirits a little boy to Press On. Therefore, we ask everyone who has continued to believe in this little boy to continue praying with as much fervor and passion as you can conjure.
Yesterday morning I took both Christopher and Nat to their respective Church league basketball games. It was between games that I heard from Tara about Brennan’s inspiring intubation experience. I called and heard his perfect little voice for myself (Talk about a 180 from the Saturday before.). I was truly speechless.
Arriving at Nat’s game, which was held at St. Anne’s Catholic School in Bartlett Tennessee. There was a long delay between games, so Christopher and I found ourselves taking advantage of the extra time and a warm Saturday afternoon to walk around the school yard a bit. There, across from the gymnasium, was a metal sculpture of St. Jude with a prayer inscribed at its base. “I promise, oh blessed St. Jude to be ever mindful of this great favor, to always honor you as my special and powerful patron and to gratefully encourage devotion to you.”
As we walked and talked about this, Christopher leaned against an outside wall of the church, accidentally triggering one of those automatic handicapped door openers. He was startled and fell back into my arms. As we looked up, we were staring into a chapel where a priest was performing the communion rite.
“I think we are supposed to go in here,” I said to Christopher. And we did. Like Brennan and for Brennan, we let go, we trusted and we gave thanks. And, like always, we Press On.