published on CarePages March 8, 2011
“Let it grow, let it grow,
Let it blossom, let it flow.
In the sun, the rain, the snow,
Love is lovely, let it grow.”
The news of Brennan’s remission was accompanied with impressions of opportunity, distraction and perspective. Opportunity to breath. While still intently focused on a litany of unresolved medical issues (high blood pressure, kidney and liver functions, GVHD, etc.), the precipitous withdrawal of catastrophic disease as an immediate concern lifted the oppressive hand of fear and misgiving, our minds suddenly buoyed above water, gasping and relieved at the sight of blue sky.
Such an abrupt change of viewpoint creates immediate changes of mindset; some, simply from the elation of attainment; some from the raw instinct to reach outward quickly, grasping for anything that offers even the perception of conclusion. This can occur in the form of any number of well deserved and, sometimes overdue, distractions; sorting through what is practical and worthwhile versus distraction, for distraction sake, is the trick. With a kid still struggling in the hospital, and two others equally knocked over by the rush of fresh air from the news, none of us were exactly spraying the champagne bottle (yet); nonetheless, we are all certainly able to go about our day-to-day business realistic intent to get our “real lives” back on a new, more stable path that both honors and celebrates the miracle of a third remission.
As such, it worked out where I was able to slip out of Memphis for a few days last week, stealthily arriving in Augusta to take care of some over due-business, map out the future a little bit and hug some important necks.
Such a trip would have been beyond comprehension two weeks ago; but with a good pathology report substantiated with a negative MRD analysis, the time was right. Christopher’s Godmother, Adrienne Eischeid once again generously gave her time from her family to cover for me while I travelled home. Tara was looking forward to seeing her dear friend from “back in the day” (as the boys say) and things were simply smooth enough for me to step out for a few days.
What made the brief transition even easier was the fact that Brennan did NOT get discharged from the hospital last week. On the surface I realize that this sounds like the more difficult way to go; but depending on the patient’s degree of invalidity, it can make things a lot easier. We’ve been in hospital mode for months now, so packing things up and moving a very weak and fragile Brennan back into conventional housing would have been too much for me to leave. With the astounding number of meds that he requires, plus IV feeds, plus NG feeds, plus IV anti-fungal, plus IV anti-nausea, the parent in an out patient situation literally assumes the role of nurse, staying up literally around the clock making sure things are running as planned. The bottom line is that until he is stronger and less volatile with his blood pressure and GVHD, we are more comfortable with him inpatient.
I woke up this last Monday morning, the day I was to leave for Augusta, to a doozy of a thunderstorm. I actually had reservations to fly out of Memphis via US Air to Augusta around noon; but knowing the storms were on the way, and having received updates “on the eights” by accu-Nat, who had been a wreck fretting over the threat of tornadoes, lightening and hail all week. One of the biggest mistakes we made as parents was allowing Nat, as a five year old, to become obsessed with the Weather Channel, “Storm Stories” in particular. “Keraunophobia,” I have learned, is the fancy name for this obsession; but this time of year he is a wreck, particularly in Memphis where practically every other city block has the equivalent of an air-raid siren which splits the ear sufficiently to where one could care less if a tornado came blazing through.
The week prior, the sirens were off when all of the boys were visiting St. Jude. While the sirens were active, every single bed in the hospital had to be evacuated to the central corridors, away from glass and potential flying objects. It was actually the perfect place for Nat, who found comfort in the seemingly blase’ reactions of his fellow potential victims. Even the patients, who were all forced to be in wheel chairs (many of whom barely had the strength to be out of bed) seemed to find strength in the communal atmosphere, which is always one of the more conspicuously absent components in the lives of immune compromised transplant patients.
So I guess Nat’s phobia rubbed off on me a bit the night before my departure. Whenever I have a plane to catch, the anxiety begins to creep in. Security, arrival times, potential delays, luggage retrieval. What used to be part of my day to day life as a professional (back in the old normal) has transformed, are least for me, into one of life’s least tolerable prerequisites. Therefore, I think my anxiety was a cocktail mix of both pre-travel nerves and the storm. The thing that woke me up before dawn, though was the storm.
This was all early Monday morning. Nat, Christopher and I had moved back into Target House the Saturday night prior to. Assuming Brenny was getting out of the hospital early in the week, and not wanting to leave the task of moving from the Bluff back to Target House in Adrienne’s lap, we found ourselves shuttling grocery and luggage carts back and forth to our fifth floor apartment until close to midnight that Saturday.
Whenever Brennan is discharged, he is still to maintain separate living quarters form the brothers until we receive further notice from Dr. Leung. The bottom line is that, as long as any lingering threats of ether the flu season or school related viruses remain, the boys can visit, but must remain separate. A year ago, this mandate would have been subject to amendment; this year… well, let’s just say that we’ve come too far to argue. A winning lottery ticket should be stashed far from the fireplace.
So by the time the thunder rattled me awake, I woke to find the brothers nestled in the familiar old beds which have occupied and cuddled them through countless dreams, worries and prayers along this journey. Finding my way to the single 1980’s era recliner adjacent to our living room window, the occasional flash of lightening would illuminate the all familiar silhouette of the little chapel steeple outside of our window. This exact perspective has provided me the focal point of countless intentions over countless days. I cannot count the mornings here, denuded of self-esteem, quivering in awe of the sublime, defined for the moment by this seal of Gethsemane residing just beyond our refuge. I will never forget this simple, unadorned image, that still bears the mark of God’s promise and my most fervent emotions.
Daylight filtering through the clouds revealed faint hints of red in the suckling leaves of a maple tree. The first leaves of of every spring mirroring the last vestiges of fall. Through the winter months, these branches, naked and frozen, offered no evidence of life. Only the evergreen magnolias leaves broke the monotonous grayness of it all, but they often struggled under the weight of snow and ice.
As the morning wore on, I continued to sit, stare and focus. The storm suddenly diminished. Daylight had prevailed.
There was well over an hour ahead of me before the boys needed to wake. I contemplated the miracle before me, the miracle of a brutal and forbidding winter surrendered. With renewed life in spring, death surrenders its claim to the unyielding love of three brothers, bound by blood, steadfast in life. The weapons of winter literally melting in front of me, exchanging the tools of misery for nourishment. Robins, who I had watched fleeing the cold, seemingly yesterday, are alive and abundant in the trees, sharing communion with all creatures who yearn for life’s true bread; innocently, and with no more contempt for the harshness of their environment than a boy for a disease that has changed his life forever.
The storm heads east. The sun rises in time for the Brothers to rise for school like any other day, hopefully oblivious to the struggle that has seemingly passed. I decide that, rather than risk a day of flight delays headed into the bad weather, I’ll drive home, breath a little bit and enjoy some time alone for a change.
Although Tara is religious about her yoga and meditation, she has yet to carve out time alone, even eight hours in the car by herself. But she relishes the gift we now have of a boy who has fought and conquered two years of terminal disease in the past two months. Like me, though, she understands the fragility of it all and that, while his leukemia may be undetectable, it will remain so only if we are successful in helping Brennan grow strong again.
The issues he deals with now are virtually identical to those he has been battling since ICU, and before the earth shattering results of the MRD. Depending on which doctor you talk two, his issues are effectively prioritized as: 1) Graph Versus Host Disease; 2) High Blood Pressure; 3) Nutrition, weight gain, rehab, etc.
There are strong arguments that any of these issues could assume the role as public enemy number 1, as all are both directly and indirectly intertwined and related to one another. The GVHD in his gut has shown signs of some improvement, with less regular diarrhea and vomiting; however, with both local and systemic steroids prescribed for this disease, the blood pressure has increased to levels far in excess of that acceptable for a child of his age. Just last night the BP spiked up to 150 over 112,representing that, although we have three meds prescribed to keep things under control, it remains a serious issue. Today, though, it is back down in close to normal range.
We believe weaning him from the steroids are resulting in lower BP levels; however, with that we now pray that the GVHD remains in check. This past weekend we started to see an increase in diarrhea and the recurrence of a skin rash. Nausea crept back into he picture too. This past weekend was a wretch-fest, lying awake all night in some instances either with a bowl either underneath him or in front. It is being considered that one of the newer blood pressure meds may be the nausea culprit; but to ensure that the GVHD symptoms do not swing back in the wrong direction, it may be a few days before we get our arms around it all. Fortunately, they currently remain more on the good side of the fence that the bad.
There is a balance here to be found. The doctors refer to all of these matters as things to be “tweaked.” With regard to the all of Brennan’s lab work, he continues to show slow and steady improvement. His ANC remains in the 8,000 range. His hemoglobin has been steady in the 10.5 range, with no transfusions in I don’t know when. Even more astounding, he is producing his own platelets and has hopefully seen his last transfusion last week. Between Saturday and Sunday his platelet levels increased form 35,000 to 58,000 and has remained steady.
So, while all of the the details associated with “tweaking” may sound terrible, I can assure you we are happy to deal with this level of care versus where we were. As for Brennan himself, he has every reason in the world to be a whimpering shell of a boy. But he is all Brennan. Even in the midst of the vomit volleys his beautiful spirit shines through. A close friend delivered some of his children’s scale metal tanks and command cars fro Brennan’s WWII collection, triggering a renewed vigor in his dialogue and in his general demeanor. He is researching things on his Ipad; asking questions about guns, hunting and golf. Today he even took a “word jumble” book and decided to find the words without looking at the legend. All of these things are break-throughs. The ICU experience aside, he has hardly generated enough energy to ask for anything besides water. Now he is back in charge, sitting up, doing his daily physical therapy, telling us what he wants and what he is looking forward to doing when he gets out of here.
As to the nutrition, well we have a long way to go. The gastric tube will be installed Wednesday and will hopefully give us another tool with which to “pump-him-up.” Given all the procedures he has under his belt, he is actually looking forward to this, as he understands that it will be another tool to help move him in the right direction. My prediction is that, once this contraption starts to show some results, he will start eating again.
And it looks like Tara may be taking her road trip after all, Next week is the boy’s spring break, representing time for Tara to take a long overdue road trip away from Memphis, concluded with a trip to the NCAA tournament with Nat. As of today, it looks like Brennan may be outpatient by the first part of next week. Therefore, for about a week, its just going to be me and Brenny. It is going to be a lot of work, but I cannot wait.
Today we weaned him down to oral morphine, meaning one less anchor to the hospital bed. Once we are out on our own he will still be dependent upon the NG and IV feeds, as well as a number of meds that will be administered through the NG tube until this is replaced by the G tube. It will please him greatly not to have that thing protruding from his nostril. This will help tremendously with his self esteem.
And on top of it all, his hair is starting to grow. Saturday morning, he woke up, started rubbing his head, smiled and exclaimed, “Daddy, I have hair!” Sure enough, I reached back there and felt the same scrabble he felt. This morning it is starting to show signs of a “5 o’clock shadow.”
ABout this time after the second transplant, my friend Travis Gamble mailed us all “Life is Good” hats with and emblem on the front that simply says “GROW.” To be honest, I never really wore it that much, afraid that it would somehow jinx the fragile balance of remission he had achieved at that time. This time around, I’m wearing it. Deep down in my gut and my heart, Tara and I feel good about the long haul. It’s been a long haul, and we know there are no promises. But seasons change. Time to grow.