posted on CarePages May 24, 2011
“It’s a hand-me-down, the thoughts are broken. Perhaps they’re better left unsung.
I don’t know, don’t really care. Let there be songs to fill the air.” – Robert Hunter
“At this time I would like to ask you all if there are any milestones or special days of recognition that you may like to share with the congregation?” It is a question that Father Tim Fitzpatrick poses to the Sunday evening worshipers every week before the final prayer and recessional hymn at St. Patricks church in downtown Memphis.
This particular service is one that we frequent more than most others, considering that more often than not Tara and I have to attend church separately. With one of us attending to Brennan and the other with the brothers, Sunday is yet another day of the week where we “take turns.” Our affiliation with St. Jude and Brennan has established many choices for us on the menu of ecclesiastical options. Not being officially affiliated with any particular church in Memphis, we bounce around from place to place; however, we are fortunate to have generated some genuine ties and friendships with various priests and congregations around town.
For a variety of unconventional reasons, St. Patricks has fallen into the realm of our favorites. While physically dwarfed by the Fed-X-Forum across the street, it otherwise rises above the derelict blocks just south of downtown and Beale Street like a surviving monument among the ruins of a more prosperous time. An entire city block exists behind the church, with the exception of a single brick apartment building, surprisingly clean and spartan relative to debris surrounding it. Most of the remaining community east and south of the church is devoid of life, victim to the cancer of crime and urban blight. Driving to and from church, one can observe small encampments of people at various places around the block, congregating around barrel drum fires in winter, or enjoying the shade of a houseless front-stoop, sheltered only by shade a stubborn grove of hackberry trees.
I mention all of this because, like a dependable friend in times of need, the Sunday evening mass at St. Patricks has become a special place in the wasteland of our emotions. Its physical prominence and beauty, as well as the pure civic magnanimity of its members, combine to preserve this fertile enclave as a welcome refuge from many brutal and nearly devastating personal experiences. This Sunday, though, it was place of celebration, the framework for yet another milestone which, under honest confession, had been doubted only weeks ago.
Yesterday, the communal aspects of church and the reason for attending could not have been more uncomplicated. On this beautiful Sunday afternoon, thanks to a community of friends, family and caregivers who span a world, all five members of our little family attended church together for the first time since September. This community, impalpable from any perspective, is how Brennan made it to this city, through this experience and, ultimately, to this church on this day. Likewise, through the extraordinary doings of many loving people, Christopher’s ability to make his first communion at St. Mary’s in Augusta only a week ago, was the product of this community; allowing us, on this day, our first experience ever receiving holy communion as a family. A true rite of passage… a first and, therefore, a last all in one.
Just one week ago Brennan was in ICU. Returning that Sunday from the St. Mary’s second grade communion celebration with Nat, Christopher, and the surprise accompaniment of the grandparents, we landed back in a cold and wet Memphis with Brennan just getting his walking papers from his ICU room to a regular room in the bone marrow transplant unit (again, as an allogenic transplant recipient, he is always a “transplant patient” when hospitalized, even for an infected gallbladder). I had left two days before with him barely awake enough from his 14-hour propofol slumber to even recognize that he was in pain. On Sunday, he was nothing more than a little sore, sitting up in bed cranking out mini-art projects for nurses and his grandmothers. With one of those roll-away hospital meal tables overflowing with magic markers, crayons, paints, cups of paint-stained-water, glitter, stars and stickers of every material and persuasion, he was engrossed in each little “canvas,” uniquely crafted for each special person, perfunctorily reviewed for final approval and then briskly set aside and filed for the next project. His little motor was redlining, cranking these things out like a savant writing musical scores; one to the next, seemingly with mindless effort but with sufficient mindfulness to convey that each one was truly form the heart.
The grandparents, having not seen him in misery the week before, seemed astonished at how great he looked. After all, these Carepages did not exactly portray an energetic nine year old interested in art; but clearly, having nipped the source of his infection in the oleaginous bud, he was back on track, quickly.
Each day of the week progressed in equal distinction. By Wednesday, the little plastic drain tube which had been installed just outside of the six-inch incision for the purpose of collecting residual fluid and blood from the procedure was removed. As a matter of fact, he removed it himself. The chief of surgery, dropping by the room early Wednesday morning to officially sign-off of the case told me, “he did it like a true cowboy. He pulled a lot slower than we would have; but he called the play the way he wanted and sucked it up like a man. Amazing kid.” With that, the surgery was officially a matter of the past.
As for matters of the present, the infection technically remains a concern, at least until the antibiotics run out later this week; consequently, he will complete his 14 day cycle of the Daptomycin which we, of course, pray will clear up the VRE forever. This drug is administered by IV every day in the medicine room. Only about a 30 minute or so exercise, it is of no inconvenience whatsoever. Even with the inevitable delays associated with having the meds ready, or the staff available to administer the stuff, we feel like we have won the lottery yet again. How lucky we are in this situation is clear. Kids often do not walk away form what Brennan did last week.
The other IV drug that he is getting, now every other day, represents probably the only real by-product of the whole infection thing that gives us pause. Systemic steroids. Of course, it is related to the GVHD, which has flared up when his new immune system kicked into overdrive to deal with the infection. The initial symptoms were in his poop (The quality of a man’s poop speaks volumes about his health when it comes to GVHD.). At first we were back into the black oily diarrhea and jelloesque substance, which had me losing a little sleep over what seemed likely to be a large step backwards. But like the pain, it too has improved and seems to be headed on the right track.
He still has a very conspicuous rash that waxes and wanes with the sun and the moon. On days that he receives the steroids, it is more on the waning side of the fence. But it is still there, and sometimes brilliantly red. When it is present, the affected skin begins to take on a weird reptilian texture (not unlike my watch band). Like a reptile, his skin heals slower than normal human skin. Indeed, in the case of his hands, it is currently molting. For him, it represents a constant state of itching and scratching. When the molted areas are present, it means, peeling, which results in an infatuating type of nervous fidgeting that sometimes results in bleeding and soreness. Fortunately, Tara and I lather him frequently from head to toe with Eucerin cream (to the extent of leaving him covered in the emollient like a clown, with only the white base and no personality), which absorbs into his little body so quickly that within 15-20 minutes or so he looks totally normal.
Steroids are something we always want to avoid. For the time being, it looks like their frequency will be dialed down over this week. In a way, it is a regretful situation; on another, it is a reminder both that we are dam- lucky to have a kid with a rash and that, come summer, we have to be hyper-vigilant in keeping him out of the sun and away from anything that can re-trigger GVHD. Everything else about him is telling us that he is as strong as a young colt (albeit a nauseous one with a rash). As long as we can keep him out of this particular patch of dark no-man’s-land, it looks like we are back on track to bring him home next month.
Tara and I were both happily shocked when Dr. Leung told us that, with the completion of the antibiotic regimen and the GVHD under control, he should be back on track to get out of here after the third week of June. Just after the surgery, particularly with all the talk about ventilators and organ damage, we were certain that we were set back at least a month. We both joked that Nat’s broken arm had become a blessing, giving us an excuse to miss the early part of this summer’s competitive golf season and keep the boys here in Memphis without complaint. We were so convinced of the set-back that Tara and I actually discussed strategy about how to talk to the Brothers about it.
Intentionally or not, Dr. Leung had thrown us a life preserver. Not only was he discharging Brennan from the hospital back to the relative freedom of an isolation suite at the Grizzly House, but he was telling us to “GO HOME,” words of liberation to the Brothers. “There is no reason that you shouldn’t be able to get home within a couple of weeks of your original plan,” he proclaimed, much to our delighted surprise.
At 3:30 that afternoon, the Brothers were greeted form school with the smile of their formerly hospitalized Brother, feeling better than he has in recent memory, and with the wonderful news that we were going to make it home this summer after all. Good news is always good medicine; but when it replaces bad news, it is the panacea of all misgivings. They were elated.
So, wednesday night, Brennan was out, and each day since he has continued to blossom brighter and more deeply rooted than the day before. The colors shine brighter with every day. Tension and fear fall aside like last fall’s chaff to the petals of new blossoms. Like a fog suddenly lifted by sunshine, there is light in the wasteland.
Of course, like the garden that attempts to flourish in damaged soil, by definition of Brennan’s status there are and will remain concerns for some time. There is still plenty of wasteland to navigate. The most pronounced, of course, is the resurgence of his GVHD and the long term management issues related thereto. And, of course, there is nutrition; that pesky little inconvenience that gets in the way of those who remain linked to the food chain.
He still has not eaten a speck of food in months (at least not anything that he has not vomited back up since October). I had been nervous that the gut GVHD was flaring up and setting him back even further in this regard; but with his discharge, Dr Leung ordered us to reload his g-tube feeds, which have been steadily but slowly increasing since last Thursday. He is back on the Vivonex (which is essentially the predigested slime that premature babies are fed). As with our last attempt to jump start the nutrition, the game plan remains to taper the TPN feeds as the g-tube feeds increase in volume, and gradually change in composition. As his gut tolerates more and more sophisticated feeds through the tube, he has got to eventually crave something to eat and keep it down.
So far, he is tolerating things reasonably well. Everyday there is at least one reminder that he can throw up with the best of them. But it is not constant as it had been. The best sign that I have had in this particular area occurred yesterday in the medicine room. With eyes suddenly bulging and a raised hand flashing a two digit peace sign, we gathered his backpack of pumps and accessories and headed to the isolation bathroom (the vomitorium of pneumotosis days). He likes it when I crouch in front of him so that he can rest his soft little head in the cradle of my neck and shoulder. Outside of the activity that brings us to this place, it is a rather affectionate gesture that I enjoy greatly. This time, however, he lifted his head suddenly and announced, “Daddy! I feel a real one coming!”
Lo and behold, on display for us both as we cleaned up and stared back down into the bowl like two plumbers pondering a solution, was a normal looking configuration of the #2 variety. We smiled at each other and high-fived through the tangle of feeding tubes. “Daddy…” he volunteered as we packed it back up for his medicine room appointment, “I think I am going to have to get used to doing that again. That was some hard work.”
As we move on down the road, hard-work is certainly nothing I see him shying away from. And the chores that lay ahead seem like easy post-odyssey check-list articles compared to the trail blazed behind us.
But as the garden grows and flourishes among the ruins, we know that the path that lead us here will not be taken again. We have been told we can leave. And outside of a check up here and there, we know that we cannot return. It is now our responsibility to nurture and cultivate what we can from the gifts we have received.
During last Sunday’s mass, Brennan and I arrived about ten minutes before Tara and the Brothers (still living separate lives to a large degree, the boys will most likely maintain separate living quarters and lifestyles until we officially hit the road). The vast white ceiling and beautiful spartan sanctuary was brilliantly lighted by the setting sun through the stained-glass windows to the east. Being the only two in our pew, Brennan nudged up close to me and placed his head on my shoulder where I could run my hands through his velvety new head of hair. The light shifted, prompting Brennan to turn his head toward me and shield his right eye with is little hand. Looking over, I noticed that the window responsible depicted Jesus and Lazarus.
As we drive up earlier, Brennan had told me he did not want to take communion. Considering everything, I assured him this would be just fine. Soon, though, Tara and the boys came in the back door, meaning that they had to walk form behind the altar to our seats so that the entire congregation could seem them walk in, all smiling at seeing Brennan sitting next to me.
Brennan stayed at my side while Christopher jumped up into my lap. Nat looked over, grinned at me and gave me a thumbs up with the broken arm supported by his Memphis Grizzlies blue cast. Tara squeezed my hand. I smiled at her. She slowly lifted her eyes and smiled back.
With the liturgical part of everything coming to a close we all stood to share in this first familial rite when Brennan pulled me down and whispered, “Daddy, I want to take the bread.” We walked to the altar. He took in confidence.
We will break bread together again; with God’s grace, often. And I pray that we are able to revisit this place over and over to relive this act that galvanizes the universal love that we are all capable of sharing. But I have also learned from this boy that such rites underscore the importance of performing all that we do with mindfulness and openness of heart. As we prepare to leave Memphis, we understand that we leave with precious gifts in hand. But for gratitude, nothing can remain. Like everything that is able to grow and flourish in this world, such things happen once. Only the love through which we experience it lives on.