Storm Stations

posted on CarePages May 7, 2011

“We shall overcome
We shall overcome
We shall overcome some day
Oh, deep in my heart
I do believe
We shall overcome some day”
Charles Tindlay

It was the week after Easter, tornadoes, evacuations and rising waters. A lot has happened, and is happening all around us. As this entry began, the anticipation of colorful linen outfits, pastel eggs, fresh spring flowers and the celebration of the most improbable of family gatherings had been replaced by tornado sirens and minor evacuations of the Target House, relegating all of the residents from their apartments to the interior first floor hallway. What remains is a colorful story, to say the least (but a lesson for me to get these things done and out before the circumstances get to weird and hard to explain).

During our first evacuation of the season, the Boswell brothers accompanied me, Tara and the Brothers from school; the intention being a Target House karaoke party. While the Karaoke came to pass, the tornados descended upon us Christopher had hardly completed his rendition of the Jackson Five’s “I’ll be There,” with Graham Boswell pulling off “Separate Ways” by Journey just as the siren wailed. The plug was pulled and we were all shuffled off to the shelter, sardine style.

The Target House shelter is the interior hallway of the isolation floor. Crowded it was. Everyone we knew and then some were crammed in there. Kids in wheel chairs. Others bedridden, wrapped in blankets starting at the walls gaunt and expressionless from their place on the floor. Given that the two younger boys in our group, Christopher and Evan, were dragging themselves around on their fists like chimps, the majority of our fellow evacuees offered expressions of amused relief when we quarantined ourselves to the stairway from the rest of the crowd (at least sparing them from the humiliation of our company, if not from the looming, and ultimately malicious, tornados that narrowly averted us this particular day). While ultimately passing us by, this storm made a path through the south that will never be forgotten.

As I sat in the stairwell, half-laughing at the antics of Christopher and Evan, and half-concerned about the noise outside, my thoughts were with Brennan and the irony of ending everything by the ill-fated placement of a storm. Tornados outside or not, the presence of each fellow evacuee reminded us of how many tough lessons can live under one roof.

Still in “isolation,” (having failed to rid himself of the VRE bacteria for even one week), Brennan missed out on this experience with his brothers, as he does most, weathering the remainder of the storm at his new room at the Grizzly House. Mimi had been in town all week, remaining behind to help Tara with the boys when I left town later in the week for Augusta.

For the time being, however, Brennan and Mimi were subject to their own evacuation at “the Grizzly.” Calls to them gave us comfort that they were all safe, but clearly established the fact that they were not watching the storm from Brennan’s new room, which has once again graced us with a 180 degree panorama of the Great Pyramid, identical in orientation to his room in “transplant,” only closer.

Separation of family for events of all kinds is simply our life for the time being. Despite their average one-hour visit everyday, the two Brothers rarely share any of their daily rituals or special events with Brennan. Two weeks ago, post Masters, was the first exception. Fortunately, Brennan showed sufficient signs of inspiration to make the trip to Augusta.

Despite the ubiquitous back-pack, weighted with both TPN and G-tube pumps and feed bags, he still managed to demonstrate his inspiration for the Masters when we returned to Memphis. For the first week back, all he could talk about was getting on the putting green and driving range. He even joining us for a few holes until we were told by the BMT team that golf on real turf is strictly off-limits until further notice (he can hit from the artificial turf, but the spores and bacteria and dirt from divots can initiate the wrong sort of problem. He seemed to be getting stronger.

These outings were wonderful but, unfortunately, the exception. Separation is always conspicuous. For him it is uninspiring, and often contributes to lethargy and a general blase feeling about his isolation. For us, though, he is all inspiration. Even the intermittent signs of vibrancy (along with the weekly chimerisim reports that have shown 100% donor cells for many weeks now) have been sufficient for all of us to hold on to a stronger sense that the storm may be subsiding; and that, despite the too often devastating news of what is happening around us, we will come home someday.

Planning for the ultimate trip home, I was actually away for most of Easter week, trying my best to meet with some folks and jumpstart some business opportunities. I returned to Memphis on Maundy Thursday to find Mimi and Pat Pat already in town for the Easter celebration. Arriving “home” near midnight to an empty Target House apartment (Mimi, Pat Pat and Nat were at the Bluff and Tara was at Grizzly with B and Christopher), I was roused from my travel fatigue with a call from Brennan and Christopher that they were still awake and waiting on me to spend the night with them.

Barely in bed, I put on my clothes at midnight and sleepily packed for the trip across town. I was flat out tired, and gave more than a second thought to seeing them, but the eagerness of these boys to welcome me home for the first night of their Easter holiday was ample fuel for my fire. Seeing Brennan’s face light up when I finally arrived, I was once again convinced that his thoughts were slowly but surely emerging from isolation to the world outside.

Next morning, Christopher and I left our abode du jour to meet Mimi, Pat Pat, Nat and Nat’s friend Max Adleman for a Good Friday ceremony, leaving Tara behind with Brennan for his final week’s clinic visit. As usual, he was ok with being left out of the larger group, an issue which offered up mild concern given that his grandparents were in town.

The observance was for the stations of the cross at St. Patrick’s Church, entitled “A Walking Meditation,” via which members and friends of the Parish marched in unison through the streets of downtown Memphis’ south side, stopping at places of historical significance along he way to focus on the various stations commemorating the conviction, execution and burial of Jesus Christ.

As both a neveau Catholic, as well as a newcomer to “the stations”, I was really curious to see how they intended to tie all of this together. I didn’t really know what to expect. But familiar with the inner city blight surrounding the church, represented primarily by careless “urban renewal” style demolition and a multitude of vacant lots, littered with trash and relics of residences and buildings long sense victim to the wrecking ball, I could not quite piece together how this part of the community and Jesus’ last day as a man overlapped.

But as our band of worshipers and followers-along congregated outside the rear of the church, the sound of guitar music and passionate singing from around the corner traced a faint outline of what we were to experience and an image I could comprehend. An older visiting priest, friends with Father Tim, revealed himself as the guitarist, maestro and leader of our eclectic group. Leading him around the corner of the building into the street was an older gentleman, wearing a floppy sun-hat like Brennan’s, khakis and tennis shoes, leaning into the arm of a life-sized cross which he toted with some degree of effort as the visual focal point keeping everyone walking in the right direction.

This wonderful mixture of celebrants, represented by people of all ages, races and even disabilities, stopped for the reading of the first Station, and then to the tune of Amazing Grace we all marched in unison down the street to the Clayborn Temple. The shell of this beautiful building is the remainder of what was the heart of the sanitation strike that brought Dr. Martin Luther King, Jr. to Memphis. Now, it sits boarded-up without a congregation, and, often without a second look; but nonetheless, it is a relic of a very real and poignant local history involving unfairness, the death of good people, but also courage, compassion and hope. It was the perfect place for me to begin feeling the point of the various stations.

On like this it went. Block to block, station to station, hymn to hymn we marched through the streets reliving this most meaningful day in human history, but in a way that forced us to acknowledge the many crosses we bear as both a community and as individuals.

We walked to the Lorraine Hotel where King was shot, turning an extraordinary number of heads who, as pilgrims to this site on Good Friday, were interested and curious as to this mass of mostly white troubadours. There were vacant lots where children had lost their lives; offices of people who dedicated themselves to the common good. Every station represented someone willing to wipe the face of others in need; others willing to bear the weight of another’s cross after falling (We even made a station at the Elvis statue, representing Jesus being nailed to the cross, and referencing humankind’s predisposition to praise people for their gifts and talents while averting our eyes to addiction and death lest we interfere with their status and our amusement.).

It was at the Elvis statue that Pat-Pat offered to take the cross from our floppy hatted friend. Having felt its weight for numerous city blocks, the man agreed. As the reading concluded and the guitar music started again, Pat Rice then put his shoulder to the yoke and carried the cross across the park and and into the center of Beale Street (he had no idea where he was headed at the time).

As we stepped into the Beale Street mass, our group began to sing “We Shall Overcome.” Marching, as it were,our enthusiasm grew and singing got louder as we started to compete with the cacophony of blues bands emanating from bar to bar. For heavens sake, we were in the middle of the most crowded and festive of places in all of Memphis (on a holiday!). At first I was overcome with a wonderful sense of laughter as my father-in-law lead the marchers with his gigantic cross across his shoulder.

I then started watching the folks on the sidelines, peering over their plastic beer mugs, gnawing mindlessly on ribs, as this totally unexpected and out of place troupe bore their crosses back to St. Patricks. Briefly distracted from their partying, some in total befuddlement, others amused or embarrassed, a lot of folks took pictures. Everyone looked on in respect as we pursued this most unexpected march on this significant day to this most appropriate song.

Somehow, the entire weight of Brennan’s journey, with all of its stumbles, with all of the people looking on, but with so many helping all of us along, lifting our loads, wiping our brow with kindness, generosity and prayer, the point of it all for that moment appeared clear as the day before us; not heavy, but wonderful.

Not long ago I would have been way too embarrassed to have participated in such a spectacle. Having been stripped naked, shivering in front of God and all for the past two years, I felt on that walk as if the magnitude of what has happened to Brennan gave me the right to sing out loud and let it all go, particularly on this most significant day. As my father-in-law carried this cross for the other man, I thought how Brennan has been handling all of the heavy lifting for me and so many others. A boy, assuming the weight of it all for others who he loves. What a notion.

The fact that Brennan was not there bothered me for the first part of the walk. At first, the music, and the strong spirit of everyone in attendance made me wish he and Tara could be there. But as they experience grew into this strangely beautiful crescendo, I realized that the day’s lesson was more of him than for him. For me, it was a meaningfully symbolic summary of our family’s battle; an allegory more meaningful to the affected civilian than to the soldier himself. Had he been healthy and able to handle the walk as his brothers and friend, able to more freely humor the old man’s quirky and sappy perspective of things, I would have loved him to be there. Next year’s walk with him is already on my calendar.

No matter what’s in our cards, Easter in Memphis may just have to be our tradition moving forward. As a meaningful lesson and experience it was strong; but as an exercise to remind us of difficult lessons learned, and often painful to relive, the place and the timing could not be more appropriate. Hopefully our family’s Walking Meditation will have a representation of five, soldiers included.

In the meantime, the crosses may seem different, maybe lighter, maybe heavier. Whatever the character or composition, they must be carried with no less resolution and grit, and no less willingness to leave the sidelines for a brother in arms.

Memphis, Tennessee is part of our lives forever. As our first oncology Nurse Practitioner advised me and Tara about life with pediatric cancer, we have “new normal.” Our new normal includes stations that must be revisited, for the sake of all who have suffered and sacrificed and or the sake of suffering itself. It cannot be dominated by not the elements of fear as we struggle for spiritual balance. Fear is there, but rather as the waves against which we brace our keels for safe travel.

The waves seem to be all around us these days, and somehow we feel fortunate and safe. But as the storms brew and the river rises, taking one’s own safety for granted amongst so many others is impossible. Yet the past several weeks have given us some time to rest on the sidelines, slowly working on tentative game-plans for the future.

Brennan’s rehabilitation is very slow going. Thankfully, his trip home during Masters’ weekend was nothing short of a mini-miracle, bolstering his spirits, and hence his entire being to the highest possible degree since he received his mother’s cells one hundred days ago. When you think about it, he has been physically sick as a dog since his conditioning treatment in late September, and virtually isolated from the rest of the world. Throw a couple of near death experiences in ICU and some graph versus host disease in there and the mind has plenty of reasons to start questioning things.

Our visits from the spotlight to the sideline this spring have been overdue and welcome, albeit somewhat awkward. Tara has even managed to finish her first five days away from St. Jude since she got here in September, visiting friends and earning an audience with the Dali Lama in Southern California (a rite that I find so appropriate to have happened on Brennan’s Day 100, May 5). At the same time, these trips are often strained. I’ve talked about it twice before after transplants 1 and 2, as it looked like we were finally releasing the shackles of cancer for the real world. But life ain’t the same. As the country song says, “It ain’t wrong, its just different.” I guess that’s the mindset we need to grasp firmly before moving forward.

The storm still brews and the water still rises around us. There are lots of folks out there, many of whom we now know and have become close to who are closer to the storm’s path than others. Its just a matter of degree.

The one thing that is different is that moving from this point forward, I am confident that the impressions from Brennan and from so many other kids will not allow me to experience home and work they way we did before. I’m looking forward to some time on the sidelines, but when that cross comes marching down my street, I cannot be embarrassed or ashamed to step into the path and help with the load. The load is much a part of the collective imperative as the blue sky is to enjoy.

Fortunately Brennan’s MRD came back negative on Thursday, meaning there are no detectable traces of the disease in his bone marrow. It has been THE missing key to our trip home. The collective imperative is to rejoice and be grateful for this miracle. But the path goes on, and the marchers still sing. And today we realize, that one key only opens one door.

But as each cross is laid down, it is done so with both humble gratitude and dutiful willingness to pick it up again. Having considered this last point with as much introspection as I can muster over these past few weeks, the point was driven home immediately with the onset of yet another violent bout of nausea and pain that caused Brennan to be readmitted to the hospital this Friday afternoon.

The first concern was relative to the HHV6 virus (which so meticulously dismantled transplant number 3) rearing its head again in Brennan’s blood work. Brennan was not admitted because of this, but due to the fact that his nausea has prevented him from taking his oral medications. And, of course, this news was tempered by the fact that Brennan’s graph is so strong (100% fourth donor cells in his bone marrow). But having been so close to total surrender earlier this year as a result of this virus and its collateral side-effects, it made hospitalization sound like not such a bad idea..

With Tara on her way back from California, we were praying hard that this was just a weekend blip on the screen until the nausea and and vomiting get under control. Besides, wIth Christopher’s first communion next Saturday in Augusta, we are all hoping to come home for a long weekend. No sense in taking any chances so, I accepted word of Brennan;s hospitalization as just the thing until the current storm passes. The MRD is good, right. Let’s just get him strong.

As it turns out, this was not the storm. The hospitalization started taking on some weird mojo when Brennan was getting admitted, I received a call from Maria Montessori that Nat had broken his arm and needed someone to come get him.

Needless to say, I was somewhat busy here at St. Jude and could only respond to the call with a laugh (of course I can handle things by myself… our dear friend Pete Bachelder had just left town the night before, having been here for two days to help. Leaving he said, “Are you sure you don’t need me to stay?”). Fortunately, our friend Mike Neel, who happens to be the orthopedic guy here at St. Jude, answered his cell phone and was able to take Nat’s bull by the horns, performing surgery to repair a compound fracture in his left wrist at Baptist East Friday evening. Then another good friend stepped forward, willing to step off the golf course to help a brother in need. John T. Pitts has grown particularly fond of Nat, as his son Thomas and Nat have become quite competitive in all backyard ports activities. I joked that I may have done John a favor in getting him off the course during a less than profitable round; but the reality is that, with Tara out of town, this was one of those cases where you thank God for friends putting friends first. John T.’s relief did not come until almost midnight, when Tara’s taxi delivered her from the airport to take over. With Nat in the bed, Christopher on the pull-out, Tara was relegated to the hospital floor. Welcome home.

The real welcome came Saturday morning. Nat sounded relatively good on the phone. Still somewhat groggy form the pain medications, he was actually still focused on attending the Memphis Grizzlies basketball game this afternoon (Unfortunately, I had to change my plans). He is disappointed about his prospects this golf season, but thanks to Dr. Neel, he is going to be fine.

Brennan, on the other-hand, did not awake to an improved morning. His white blood count was at 28,000 (up from 9k, indicating that he is fighting infection). His CRP (c-reactive protein, indicating the body’s response to inflation) was up from .1 on thursday to 9. His ANC is at 24,000 (up from 3,000 on Thursday), double its highest and six times the normal range.

After coach Pete left on Thursday afternoon, Brennan began to complain of abdominal pains. With Tara out of town, the Brothers piled into the Grizzly House room with me and Brenny, watching TV in the little “suite” area, giving Brennan some privacy until I finally made them go to bed. As the night wore on, his nausea got bad. Ultimately, he was doubled over in pain for most of the night screaming, to the horror of his father, but not sufficient to wake the dozing brothers (thank goodness).

We had no clinic appointment Friday, but called around 11 in order to have them check out his symptoms. Still nauseous, it was decided to admit him for the reasons stated above.

He was admitted about the same time that Nat was admitted at Baptist East and everything seemed stable until fever started kicking in, breaching 104. Cooling blankets were brought into the room to keep his body temperature at a manageable level and continue to hum loudly in the room as he still struggles for even fitful sleep. Blood work initially showed nothing; but we knew that he was responding to something in a major way. The attending BMT physician, Dr, Laver, was immediately convinced that he has a bacterial infection; and given the pain symptoms in his gut, felt they could identify it. In his words, “the stakes are very high right now.” So all of the big gun antibiotics have been pulled out, and the anti-viral meds have been changed to include ancycovir, which is more effective in dealing with HHV6 (just in case).

CT scans and subsequent ultra-sound pictures revealed an inflamed and infected gall bladder. The infection has made it into his blood stream, as detected by blood in his central line. The problem is very serious, but hopes to be “cooled” as the antibiotics begin to take affect and, hopefully reduce the inflammation (thereby eliminating the infection and reducing the gall bladder to a removable size). The cooling blankets and occasional tylenol have succeeded in bringing his fever down to a hovering 101.7 average (tylenol is used very sparingly because of potential liver damage).

Of course we have been told all of the downside issues, particularly relating to an immune compromised/transplant patient; but the hope is that once the inflammation is mitigated to a significant degree, then the surgical team can decide when and how to deal with this. A second ultra-sound will most likely be performed Monday, at which time we hope to have a clearer picture. In the meantime, we need to make sure the infection does not get worse.

Thank God for the MRD report this week, proving that his new immune system is firmly in place and strong; rendering a much different scenario than in January when the HHV6 wreaked total havoc over his third transplant Other than the fact that there is clearly a very aggressive infection, the other problem is that the immune suppressant medications he is on to fight Graph Versus Host Disease effectively tie one hand behind his back.

Infection is the number one killer of transplant patients. We are therefore counting on the anti-biotics to do there job. They have to.

The storm may have passed but the water rises. And if this year’s storm pattern continues as it has, there are certainly more looming in the distance. Fortunately, we have a lot of smart and loving people doing everything they can to keep us out of the path, and countless selfless people ready willing and able to help with the small pieces.

I wish I could begin to give a number as to the responses we received from people this week praying for positive MRD results. And then there are people like Pete, making the drive from Augusta; Susan Shelton making sure that she personally delivered to deliver good news to a family in desperate need of some for a change, and now working the weekend to look after her little soldier; John T’s bet may have been headed south on the course, but there are not a lot of folks willing to walk away from a day of golf to literally take a new friend’s kid to surgery; and there are our friends like Carissa Barrett who always mange to give us an encouraging smile and a hug despite their own struggles.

So we sit once again in the shelter of this amazing place, praying that it once again passes us by, but armed with the confidence that we have weathered worse and that the world is full of good people everywhere willing to step into the path and help.

At each station along the way we lift our crosses and walk among the ghosts of those who responded to the circumstances of their lives with trust in God. I have to believe that Brennan will do as he says, growing up to help others and that this is just another reason to huddle together in the stairwell; a station along the way As this storm continues around us, we do what we can to keep our eye’s forward and Press on to the goal. Nothing has changed.

I hope we make it home next weekend.

NTS