posted on September 6, 2011
“I do not at all understand the mystery of grace – only that it meets us where we are but does not leave us where it found us.” – unknown author
It was a dream, thank God. All five of us were in a white cottage at the base of a mountain. It was a huge mountain range under a cornflower blue sky. This was not western North Carolina. We all walked from the back door and hiked to the top, where there was another cottage. Brennan, for some reason, stayed behind.
The views were awesome. It was a crystal clear day (I do dream in color) and we had truly a birds eye view of the entire range, looking down to the little valley below where we were staying.
Nat and I walked to the edge of the porch, which was so close to the edge of the mountain that we could feel the gravity tugging us by the collar. Gingerly peering down, stretching our necks so as to avoid oblivion, the rest of the world was gone. I felt like the little kid in the movie “UP,” who found himself on the old man’s porch once his house was lifted off the ground by helium balloons. With another mountain range on the horizon, across the valley where our cottage remained down, Brennan seemed forever away. Immediately in front of me off the porch was what appeared to be one of those “infinity pools”, where the water seems to just fall away with no real edge. But I realized, that there was no pool. The entire valley was filling with water.
I panicked, “Where is Brennan!” Leaving everyone on the porch I darted through a door into someone else’s living room. Trapped in this odd mountaintop duplex, the people next door looked at me form their supper table in silent surprise. I ran back to the porch where Nat was and dove into the water.
It was rising, but I could touch the bottom. Running sluggishly through the rising water, my progress was almost negligible. Cresting the ridge, I could see the roof top of the house where we had left Brennan all alone. I was screaming in terror, “BRENNAN!!!.” The house was almost under water.
Finally arriving, the water was just above the eves. I was swimming now, and I treading water outside of the attic window,where I saw Brennan peering out at me. The window sill was just inches from the surface, but he was calm. “I am ok daddy,” he mouthed silently through the glass I woke up.
This was Saturday morning three weeks ago, just before we were to leave town for a long week away from Augusta. I went to bed that night sad, but calm. I even rested well until I woke up in a sweat to find Brennan sleeping peacefully at my side. I grabbed him with both arms,stroked his hair and prayed.
The night before we learned that our dear friend from St, Jude, Carissa Barrett, died, Walking into our room for an after dinner movie, Tara was in the bed with Brennan, seeking a little pre-bedtime energy fix before MY turn to sleep with the man. Nat and Christopher were on the settee at the foot of our couch bundling up for a late night DVD .
Brennan, holding his mom’s I-Phone, suddenly looked up to me with eyes wide open. His expression was sunken. “Daddy, look at this,” he said calmly. The text was from Carissa’s mom, Kim, stating simply, “Carissa received her angel wings tonight.”
He lifted his arms and hugged me, longer than usual. “Are you ok,” I whispered, not wanting Nat and Christopher to know yet. Carissa was one of the first friends we made two and a half years ago when we arrived in Memphis scared and green to the culture of this vast new place. Although we were veterans by that time, we were in new territory. The St, Jude mission statement alone is enough to let you know that you are not there to deal with pedestrian medical issues. “To advance cures, and means of prevention, for pediatric catastrophic disease,” it states
“Catastrophic diseases…” This part kind of stood out to me as a fairly strong term to use in a mission statement. At that time, though, things did seem catastrophic in our world; and physically moving to this institution among many others seeking hope for seemingly hopeless causes, we felt that catastrophe was always close.
Moving into Target House, among over 100 other families, marked the introduction of countless children and families who’s presence and personal stories would impact our lives for all time. Stories of inspiration, misery, tragedy and victory abound within those walls. But for the kids who’s minds are focused on good stories, we too were drawn to the folks who managed their public affairs with as much cheer as they could muster. Carissa was one of those kids. And, being one of those kids facing catastrophic odds, she and her parents were always someone we identified with much closer than most.
Brennan released me from my hug, stared me in the eye. “I am ok daddy,” he said before quickly staring down at Kim’s message, iridescently reflected upon his little face in the dimly lit bedroom.
“Are YOU ok, is the question,” Tara asked me. From her expression, she was quite serious. The next day represented our departure from Augusta for what became our first small vacation away from the family since the summer of 2008. We has been invited to Northern California with several other close friends. We were packed and ready to go. This was our last night with the boys for several days, before meeting up with them the next wednesday for Brennan’s monthly journey to Memphis. Leaving the boys has been tough for me; and preparing to be such an long distance away, my anxiousness was not easily concealed. And, of course, there were the logistics associated with Brennan’s daily medical needs swirling in my brain.
I decided to take a shower. Blankly staring at the floor, the streaming water kept me calm and gave me a few minutes to gather my thoughts before speaking with the other boys. But as I entered back into the room in my towel, Nat was standing at Brennan’s side looking at the phone. “Daddy! You need to know about Carissa.” Brennan had obviously already handed him the phone and was stared up at me, letting me know that he had not told the Brothers that I was already in theloop. He was still in the bed, holding his mother’s hand.
Nat’s tone must have snapped Christopher from his TV trance, as he jerked his head around. “Wha, what what are you talking about?”
“Carissa is dead, Christopher. Her mom just sent us a message that she died tonight,” Nat told his little brother.
Then he turned and stared at me. “Really? Is this true Daddy?” I had nothing to say other than to hug them both in the way that Brennan hugged me. Then we all just sat in the room together and just quietly pondered our own thoughts. The television was rendered to white noise. I have no idea what we were watching, or intending to watch. It was a heavy night. It was the night that I had the dream.
The next day was beautiful. I was determined to exercise before beginning our long treck to the west coast, but many logistics remained before us, not the least of which involving a thorough review of Brennan’s medicines, feeds and schedules related thereto. Tara had left the house in order to type up an overview of everything for her mother. What used to be a list of phone numbers and school schedules is now a six page outline of instructions and precautions.
And of course the Brothers have their stuff too. School started in these parts the second week of August. Brennan also was underway with his fourth grade studies (he was in 1st grade when all of this started and has progressed from year to year probably with more ease and straightforward evidence of proficiency than any of our boys …interesting, considering that his studies have been one-on-one with his teachers, requiring significantly less time than a conventional school environment. His three one-on-one hours a week have been at least as effective as full time with the others). His “aunt Julie” Batchelor has once again volunteered to work with him and to keep him at pace with his classmates at St, Mary, but in a home-school environment. Consequently, between book-bags, school clothes, play clothes, football gear, golf clubs, another bag for the trip to Memphis immediately upon our return, and or course all of Brennan’s medical accessories, a quick hand-off and departure was impossible. Somehow, that day, my brain could not compute the logistics, and it started to frazzle.
Tara and I intended to stop by my uncle Frank Turner’s cabin in Covington, GA on our way out of town where my cousin Dan would be visiting with his fiance Christine, who was making her southeastern debut with all the soon-to-be southern kinfolk. Other than this, there was no schedule that day. We were loose as geese, in theory.
We had been looking forward to this day for weeks. It was to have been a joyous time, celebrating our small reunion with freedom. But as the day went by, I felt more and more anxious and tense. By mid-morning, I was feeling obsessed over our departure time. I was nervous, I was sad. I became short with everyone, for the littlest of things, and I could not get it under control. The demons, whom I felt to have been long since gone, were running amok.
Tara and I took the boys to Susan and Pat’s earlier than planned Sensing my shaky temper, I think Tara saw this as the best opportunity to make a clean break and to get me focused on the amazing opportunity to get away for a while. Susan was not there yet. Pat Pat was working in the yard, preparing for his big family reunion the following weekend (the Brennan family reunion, actually, from his mother’s side of the family: Helen Brennan Rice), but other than unpacking the gear, our plan for a speedy handoff was nixed.
It was very hot and sunny. Pat Pat talked to us in the shade of his garage about our plans and what he could do to help us out when I Brennan started shooting baskets in the driveway.
“Brennan!,” I shouted. “Please step out of the sun. Let’s go inside and play some ping pong or watch some TV,”
“But I want to shoot baskets,” he said earnestly as he focused on the hoop and drained a basket. Just a few days earlier he read a story in Sports Illustrated about a boy his age with an immune deficiency problem who was allowed to be the surrogate free throw shooter for all players on his middle school team, considering that he could never be in a real game situation. Brennan had taken this as a challenge and has really been practicing his free throws.
But the sun was blazing. Suddenly, my temper kicked in again. An overblown attempt to make my point about the seriousness of graph versus host disease and UV rays I said something to him about GVHD, apparently much stronger than I needed to. Brennan dropped the ball and started to cry. The other boys looked some what shell shocked. Tara and Pat could see the volcano bubbling. And I knew that I had crossed the line.
In an effort to mitigate my declaration about basketball, I asked the boys if I could take them to the store while we waited on Mimi to return. Christopher had a bag of change he wanted to take to one of those change/cash conversion machines. He was excited, but Brennan was still hurt. I was hurting, have hurt him, but nonetheless, thought a distraction was in order. Nat stated with Pat Pat. It was a beautiful day, but my mind was swimming.
Tara had the idea of calling Ellen Hoffman, the boy’s former second grade teacher, to see if she may happen to be on the St. Mary campus and able to let Brennan shoot baskets indoors at the gym.
Quickly ushering Christopher in and out of the BiLo store, who was brandishing a fresh 12 dollars in green currency, we entered the car when Tara victoriously claimed that Ellen was indeed there and that the day was salvageable for Brennan. I closed my eyes, offered thanks and prayed that I would pull it together. Pulling up to the side entrance of the school, per Ellen’s suggestion, we parked and waited a few minutes for her to meet us at the glass doors. I took a moment, walked to the back door where Brennan was sitting and opened it to find him still glowering.
“Brenny, Ms. Hoffman is going to open the gym for you so you can shoot baskets. Isn’t that great?” Tara said, trying to lift his spirits. He continued to stare at the floor. “Brenny, please,” I said. “I am really sorry about earlier. I am going to be leaving you soon and I really need to talk to you.”
He looked up to me tearfully. He then opened his arms and hugged me with everything he had. I picked him up up from the car and walked under a large aluminum awning, away from Tara and Christopher. Now the tears were more mine than him. “Brennan, please know that I am sorry for how I spoke to you earlier. Its just that, for you, the sun is extremely dangerous. I just can’t bare thinking of anything bad happening to you.” We both felt Carissa leaving our world. But we also felt her with us as we embraced in the shade by his school.
Once on the road, It took a couple of hours in the car before we really talked to each other. My dark cloud carried a particularly wide swath that day, and Tara was still stinging from it. And I was stinging from the backfire. But we were able to stop at Frank’s cabin, refreshed with the beautiful new faces soon to be part of of the Turner family and by the time we made it to our hotel, where we had booked a room before our flight to Monterey. We sat together over dinner, holding hands long enough to salvage the goodness that had been prepared for us that day.
“Overdue” is not the word to describe our trip, although it could certainly be applied to an aggregate description. At the risk of sounding Hallmarkish, it was simply fabulous with great friends, sublime scenery, and even an opportunity to visit with Tara’s uncle Butch and aunt Anne (allowing us to visit with some real Meyercords, who’s family reunion we were unable to attend this summer.). But landing back in the hot south, we literally transitioned from cool coast, to plane, to car to Memphis. Susan drove the boys to us from Augusta, a tremendous gift considering that she hit a deer just minutes before delivery. No one was hurt, but se had to leave the car in Alabama.
Representing the last opportunity for the brothers to visit their old friends at Maria Montessori School until the holidays, all five of us made the trip for Brennan’s monthly appointment in Memphis. After a full day on an airplane, the drive back west offered up a blinding endless sunset. Usually, the boys are preoccupied with I-Pods, playing their own games or listening to their own music, but for the first two hours of the trip, all five of us shared stories about our adventures apart from one another. Joke volleys and improvised impersonations of one another, were interrupted only by the occasional inquiry of how much further we had to drive. On most yardsticks, it was a brutally long day of traveling; but despite the fact that we had only been separated form the kids fro three and a half days, it honestly felt like a reunion of old soldiers.
As the twilight faded and darkness covered the dark Mississippi highway, the boys finally drifted off to their own places, and reflections of the people we were to see ahead in Memphis, as well as those behind us began to sink in.
The cold, blunt blow from our news of Carissa was still fresh; and while somewhat distracted on our three day fairy-tail, our coach had reverted back to the pumpkin that it was. It was just one month shy of a year that we made this same trip with the boys, At that time Brennan was looking and feeling great, when we learned about relapse number two and set our sites to transplant #3. The last time we were there, Carissa’s apartment door still celebrated zeal and vitality with numerous pictures and artwork. I wanted to believe it was all still there. In my mind is.
With the boys in their private domain behind us, Tara and I talked cryptically about Patrick Chance and his parents very real concern that his treatment options were diminishing. His disease had progressed exponentially since his status report just one month earlier, when it looked as if he was strong and that his disease burden would remain at bay until qualification for his new trial would be secure at Children’s of Pennsylvania. Additionally, while the boys were hoping to see their old side kick Cameron Vernell (actually they are his sidekicks), who along with his mother and father represented yet another family with whom we have grown very close, we knew that his transplant had been somewhat shaky. Therefore, we were all concerned about his bone marrow biopsy which took place earlier that same day.
From the boys perspective, we were on a fun road-trip. Our perspective was the same; but we knew that our road passed through deep forest, guardedly beautiful and clearly dangerous.
Just a year ago we were all in Memphis for a “well” visit with similar demeanor. Cameron and his mom were there too. Indeed Cameron and Brennan’s bone marrow biopsies were performed almost simultaneously. Their relapses were revealed as such. So, while the tempo of monthly checkups is something we fall in time with, we have yet to maintain a rhythm for more than a few months. We therefore are always cautious to temper our optimism until such time that the woods are a bit farther behind.
For the next several months, though, Brennan will be monitored solely through levels obtained from peripheral blood draws. In addition to his CVC levels (complete blood levels: white blood count, red blood count, ANC, etc.) we also regularly monitor his T and B cells and establish the Chimerisim ratio as the primary transplant barometer. If this test reveals anything that is not 100% donor cells, or cellular/blood levels which are significantly diminished, then a biopsy would be ordered. Otherwise, we are praying that he does not require one until the one year anniversary of transplant #4.
Not arriving until almost midnight in America’s second soul city. the five of us woke the next day early on a clear hot morning. Like putting on old shoes, the carpool line at Maria Montessori School seemed like the natural place to be before registering at the St. Jude isolation entrance (Brennan still tests positive for VRE in his stool, which will most likely remain the case as long as he remains steroid dependent.). But wanting to start our day with formal greetings, we walked Nat and Christopher to their school-for-the-day from the little Harbor Town village center. Greeting Fletcher and Maria by the front door, I looked up to see little faces pressed up against the Primary School window, Looking over to the chalkboard outside of the main school building someone wrote “The Simkins are Back!” (I learned later was Christopher taking advantage of my distraction). Nat walked into his class, with his lunch bag and backpack as if were any other day; and before I could even tell him “goodbye,” a small mob of 7-9 year olds rushed outside to mob Christopher, enveloping him into a miniature tsunami of old friends,
Christopher became torn between his friends at MMS, and wanting to be with Brennan at St. Jude when Fletcher threw me a bone before leaving for the hospital. He had salvaged an old windsurfing board from a friend for the purpose of creating a paddle board and asked Christopher if he would like to be the test pilot later in the day. He suggested that I try and make it back before the end of school. It gave me the opening I needed to focus on the St. Jude appointment.
In short, the medical part of Brennan’s visit was predominantly encouraging. All of the outward signs were (and are) good. Having gained about eight pounds after the first month home, his weight has remained relatively steady for the month of August and his supplemental feeds have become more of a “back-up” nutritional option than primary. Regarding his physical appearance, I think the best word to describe the reaction of the St, Jude’s team is “astounded.” His new black hair is becoming thick and curly, and his skin looks as good or better than anyone in the family. Dr. Inabe, who had established one of the chemo protocols prior to transplant #2 remarked, “you would never know that he is a transplant patient, much less the recipient of four!”
The discussion primarily revolved around the fact that, as long as the chimerisim holds steady, combined with no GVHD symptoms, the weaning of the immune suppressants and steroids would continue. Slowly. The only real curveballs related to the fact that his creatinine levels (relating to kidney function) are on the dangerous side of “elevated.” It is suspected that the immune suppressant medication (Tacrolimus) is the culprit here, in which case we would reverse our previous course of weaning steroids first and immune meds second; however, further nuclear medicine tests at MCG in Augusta will be necessary moving forward to get our arms fully around the matter.
Secondly, the iron content (feratin level) in his blood is 600% higher than normal, a matter which, if unchanged, will contribute to liver and heart problems, among others. “Bleeding” is one way to deal with this, an exercise easier said than done on a child who has immature bone marrow, and hardly a highly active means of producing red blood cells. We have been told that there is a process to, effectively, process the blood and return it, similar to the way we harvest platelets from the blood stream and return the red blood to the body; either way, it is an issue, that along with his creatinin issue, we will be dealing with in the weeks ahead, commencing with a sedated MRi in Memphis at the end of this month. Big issues, yes But on Brennan’s scale, they are issues we are happy to have traded for the issues we had. When communicated to Dr. McDonough back in Augusta, she was delighted by the fact that this was ALL we had to report.
But the trip was more than tests. Brennan has become such an inspiration to so many people at St. Jude, and in Memphis, that doctors, nurses and administrative people were coming out of the wood work to see him, speak to him and praise him for how far he has come. Medically, very little was accomplished. Emotionally and spiritually, it was a very important procedure. He left feeling good about himself, and even more comfortable with the restricted lifestyle he leads.
We left that day, and Memphis the following morning, with the Chimerisim test results still outstanding. With everything happening around us, we knew this was the only ingredient necessary for a nerve wracking weekend. But leaving the hospital that afternoon for Christopher paddle board “test,” I squeezed Tara’s hand, looked Brenny in the eye through the rear view mirror and said to myself, “it ill be what it will be. But today is good.”
School had about 45 minutes remaining before the carpool line started. So at the little fresh water pond located behind the pre-school building, Fletcher had arranged for Christopher to receive a little bit of the spotlight. It had cooled a good bit and clouds relieved us of the midday sun, allowing Brennan to sit in my lap under a lush Crepe Myrtle tree. He sat attentively watching every move of his little brother, as I quietly rubbed my nose back and forth across the little curl at the nape of his neck.
For a minute, it looked as if the whole mission was going to be scrapped, given Christopher’s world-weary response to the life-jacket stipulation. Finally giving-in, but with noted protest, he left us all on the bank and defiantly pushed his craft into the pond; and with almost a duck-like instinct to his aquatic circumstances, he popped onto the board in a yoga-style child’s pose. With no instruction, he then reached over into the water, grabbed the paddle and stood. He glanced to me and Brennan, and with innate prowess paddled away. The shift in our day’s experience was almost surreal, his confidence lifting me above the murky tides of doubt. With a single draw of the paddle, whether or not he could do this was no longer the issue. From my bench under the tree, I embraced Brennan strongly and looked over to Tara and Nat, all equally transfixed.
With my focus seemingly jolted away from the obstacles all around, and despite the absence of news on the chimerism front, I left Memphis feeling recharged to a much larger degree than when I arrived.
The trip home also was long, but fortunately our bearings were more clear. Thank God, as the news from our close friends and brothers in arms continues to flow, and remains difficult. Driving home later that day, Tara received a text from Cameron’s mother Allison that he had relapsed again. They had probably just landed back home in California when they received the call. Within the full half of the cup, St. Jude is willing to try a second transplant, and Cameron seems ready. The empty half reinforces the vitriolic and stubborn nature of AML as one of the most ruthless forms of pediatric cancer.
And of course, there is Patrick. Crossing the Georgia line, just moments after hearing about Cameron, Tara and I decided to call the Chances about their weekend plans. Patrick was scheduled for MIBG treatment the following wednesday to establish whether or not his disease could once again be corralled until such time that he could qualify for alternative curative options. He was feeling good. All of Stephen and Erin’s Carepages and emails indicated that the news had been particularly difficult to swallow considering how good he looks and seems. Knowing that they would soon be in Philly, and preoccupied for a while, we decided that this trip allowed us time to visit. And we needed to see them. So we detoured into Atlanta on our way back.
The boys, not knowing anything about his condition (and neither does he. Likewise, his sisters have been amazingly well protected from the difficult realities of his disease.) we arrived on Saturday morning uncensored and eagerly anticipating a day of merriment with old friends whom our boys had not seen since last summer (just days after we learned of Patricks second relapse and a week before our knowledge of Brennan’s). A Saturday otherwise relegated to just another day at the golf course for me, Nat and Stephen became a beautifully spontaneous memory for the children.
The day was surprisingly cool, by our standards. A kaleidoscope of sea-blue sky filtered through a thousand shuttering green lenses above us as the boys mapped out water balloon strategy and prepared for a day of adventure. We even allowed them to assemble a surgical tubing “funnellator” to Patrick’s tree house to pelt cars as they passed by the Chance’s house. Like the boys on leave before heading to Iwo Jima, their liberty was liberal and very much necessary. Even little Anna was partaking in the mischief.
It was one of those days that God just drops in your lap, and was therefore perfect. Watching the kids shriek like delighted girls, transposed by the simplest of pleasures, our eyes were indeed fixed on the gift of the day. It allowed me and Tara to talk with Stephen and Erin about a lot of things, particularly things that we are only truly able to talk to them about. It allowed us all to confirm our commitments to Press On for the long haul; but in so doing, recognizing that, for all we accomplish, we can an only press on for the moment at hand.
It took four more days before we learned that Brennan’s chimerisim was still 100%. For a month, we will rest on this issue. In three weeks, we do it again. But we remain prayerfully alert for our brothers in arms (particularly Patrick , Cameron and Cassidy). Anyway you look at it, September, 2011 is going to be a significant month in our lives.
With emotions where they are, the barriers are gone for now. With the right intentions and focus of gratitude, I hope to keep them at bay more than I have this summer. As such the dreams are better. I wake up mornings to hold one child or another before calibrating my mind and facing the day.
This past tuesday night, having learned about Brennan’s chimerisim report from Brennan himself, who called me on my way to a meeting, it was my turn to sleep with him in the “big bed.” Fast asleep, I opened my eyes, not awakened to a bad dream, but to Brennan poking me in the cheek, “daddy, Daddy, DADDY… I need some milk, please.” I turned on the light and happily walked down the stairs to fulfill the polite request.
With his beautiful little hand, he reached over to me and gratefully received the cold glass of milk, drank and smiled back at me. The barrier segregating me to the dark places of my previous dream had been confiscated. He said nothing, but his eyes spoke clearly, “I am fine daddy.” Staring back at him, I felt the warmth of his forgiveness. It was a scared moment, brimming with the grace of his every motion, every breath.
For the sake of these children, let us not disserve them through distractions of fear, or guilt or blame. Despite our own internal burdens, the sacramentality of every moment with them can only be experienced when we forgive ourselves of these barriers. Easier said than done as we strive to reinvent our lives. But the directive is manifest in every word and everything. Keeping our eyes on the ball is the trick.
We slept well through the night. And while our hope and love for all of these kids consumes my every waking moment, I knew that, tonight, Brennan is just fine. I am fine. We are fine.
With the collective power of prayer and positive thinking having been such a vital part of Brennan’s care, and our lives through critical stages, I am pleading for all to participate in an organized day of prayer for Patrick and his family this coming Monday, Sept, 12. Scans from the last MIBG treatment will reveal his capacity for Pressing On against his disease. May this inspire us as we focus towards that day.