During my many “book talks,” someone eventually asks the question, “so how is everyone doing now?” As much as a simple one-liner reply of, “awesome,” my initial response is usually more of a pause. Approaching the 40 mark, when it comes to how many “talks” I have done, you would think that I would be at a point where I had a canned response locked-and-loaded. To be quite honest, this is possibly the simple question is the most difficult to answer.
There are five members of the Band of Brothers, if I can be so bold as to include me and Tara among the ranks; and each of us has transitioned back to the real world in his or her own way and on our own time. Of course, most folks are interested in Brennan; after all, he is the star of the story. He is Dick Winters, who while not necessarily this highest ranking member of the band, is the hero who faced the real danger, charged with the task of digging deep for courage, inspiration and the obligation to find sufficient strength to carry the members of his band home and alive. For this response, “awesome” is not an exaggeration.
Brennan had been taking MMF (mycophenolate), a chemo drug, which he took orally as an immune suppressant medication necessary to prevent a hyper-immune reaction to a cold, virus, sunburn, rash, or really anything that requires the immune system to kick-in and potentially trigger Graph Versus Host Disease. To those of you who have read the book, you will recall that GVHD, in Brennan’ case, is a chronic side effect of having had one’s immune system replaced by someone else’s, wherein the new immune system overreacts and begins to attack the vital organs of the host (the bone marrow donee). He had been taking MMF orally ever since he returned home. Needless to say, a daily dose of chemo does not bode well for someone who has to rise early and attack the day. Brennan’s mornings were, more often than not, started with a languid rolling of the eyes and a listless, “I am sorry Daddy, I can’t get up.”
Through the entire 2014-2015 school year, Brennan missed more school than he made. The uphill battle of being 5 years behind in math and grammar was met with an even steeper grade, as his peers continued to move along at their customary pace while Brennan, although moving forward, moved so at a rate crucially slower than his classmates. Still, he hung in there the best he could. Yet, through a combination of another of God’s many miracles, and a sympathetically cooperative school, he managed to get enough done to finish 7th grade with his classmates.
Earlier in the year, however, Tara and I were faced with what appeared to be the most frightening news of his post 4th transplant rehabilitation. After his annual February check-up (represented the primary annual barrage of biopsies and tests, performed at the anniversary of the fourth transplant) we learned that his chimerism had slipped. The chimerism is the test that determines the ratio of donor stem cells to that of the host. Being that the goal is to have 100% of one’s immune system replaced by the donor, Brennan’s had slipped to 98%. Even 1% of his own immune system is too large, as any part of his original immune system would be cancerous. We returned to St Jude in April to determine a game plan, whether to address the problem with less immune suppressants, thereby allowing the new immune system to take firmer root. The risk, however, would be chronic GVHD, the number 1 killer of transplant patients outside of relapse. The other option would be DLI (donor lymphocyte infusion), where we jump started the immune system with more stem cells from the donor (his mom). This terrified us.
For the entire first three quarters of 2015, Tara and I went about our daily routines in quiet fear of having to go back to Memphis for DLI. This would mean being readmitted to the transplant unit and potentially relocating to Memphis for a period of time. We therefore gratefully received the news that the transplant team determined to take him off of the MMF and to closely monitor his blood work monthly here in Augusta (where he had to have a unit of blood drawn monthly, anyway, to help relieve him of too much iron content). Once again, we embarked upon a path no broader than a tightrope, and with questionable rigidity.
But almost to the minute of taking him off the MMF, things started to change for the better. He could wake up in the morning! He started to grow almost immediately (he is no longer the smallest kid in his class… he is tied for smallest :-). He now needs a new winter coat, having been able to wear his favorite army jacket, given to him by Ms. Hoffman in 2009. He started reading, voraciously; taking on mountain sized books, like the Harry Potter series and Rick Atkinson’s “Liberation Trilogy,” galvanizing his continued interest in WWII and the brave men with whom he so closely identifies.
As the heat of the South Carolina summer settled in, we settled into what was the most normal (and, thereby, exciting) summers since 2008. Nat attacked the golf course, while Brennan and Christopher attacked the surf and mountains of Northern California as Moondance Adventure campers. Not only did Brenna (and Christopher) live in tents for two straight weeks, as part of an expedition that took them from Half Moon Bay (where Brennan was the first of all the campers to get up on his surfboard) to the rock faces of Yosemite, to overnight rafting and kayaking trips on the American River and Lake Tahoe (respectively), and the Redwood Forest, he returned renewed, taller and confident. Today, he is back in school and has hardly missed a day thus far. So, to finally answer the question… he is “awesome.”
The rest of the answer is a bit more complex. Not wanting to risk speaking for Tara, I think I can safely say that she is awesome too. She is awesome on numerous fronts; but professionally, she is flourishing in her new calling as a life-coach. Having studied the tenants of this discipline as ardently as she called upon herself in law school, she has tapped into a depth of passion that few of us are rarely able to even identify, much less employ. And through her work she has made new relationships and created a routine that offers her an amazing sense of both peace and confidence. Beginning each day, much earlier than me, she sets herself into motion by being still, meditating quietly with a cup of fresh, strong coffee that permeates the house with a palpable balm of earthiness. By the time peer my head into the kitchen, her smile is fully and brightly engaged to her thoughts and to any of us fortunate enough to see her this time of day. This new discipline of her’s has allowed her to weather the threat of a new storm much better than me , visit logbook loans online decision.
With the initial chimerism news, I found myself drifting back to that place of uncertainty and fear, which I struggled with so much during the Memphis days and when we first moved home. Back when it seemed clear that Brennan had made it through the major cancer War and was soon to be headed home in 2012, I had actually developed some decent habits with regard to prayer, exercise and a general routine that allowed me to at least come home physically strong. Fortunately, the book, both writing it and the opportunity it created to reread all of the blog posts and, thereby, revisit the many things I was struggling to resolve personally, gave me a healthy platform to cope back home. But as I referenced in the final chapters of the book, getting back home and back into my old life was easier said than done. My old life was DOA to Augusta, confirmed as soon as I tried sticking my toe back in to the waters of work. Passion for my work had changed. Diving into the public hearings associated with the Hammond’s Ferry town Center (Project Jackson) I found that the types of things that used to fire me up hardly provided even a spark. At the same time, I could not have been more fortunate to have my new business, NewFire Media, alive and well upon my return, offering me a fresh new benefaction of professional challenges to keep my mind from constantly looking backwards at where we had been and incessantly wondering “why?”
So by the time this past summer rolled around, I found myself with a new book, and a tremendous opportunity to travel the country and drop in on a wealth of friends and simultaneously make long-overdue introductions to an equally large coterie of people who have been praying for our family. The book provided me a cathartic fumigation tool for swatting the swarm of subliminal parasites that followed me back home. I found that my guitar playing began to sound like music again. As a new member of the “folk mass” choir at St Mary on the Hill, I was making new friends, with equal passion to beautiful acoustic music. I thereby managed to create a daily platform for prayerful reflection comparable to Tara’s morning meditation. Hers was found in quiet solitude, mine in playing new praise and worship music (new to me) with a beautiful new band of minstrels.
The “book tour” delivered me a release of sorts, opening our eyes to both new and nostalgic places, and providing balm to my parasitic lesions. I don’t know how to say it other than to admit that, given the extended amount of time that I subsisted on adrenaline, dropping back to my pre-2009 environment created a psychological response comparable to the physiological effects of the bends, a decompression sickness created when gasses in the body do not have time to adjust to a rapid change in pressure. Other than being home with Tara and the boys and the book, nothing else tasted right. I faked my way through social events. What normally would have been a great weekend vacation or golf outing to look forward to, I felt confronted with drudgery. The beautiful little hide away in the North Carolina mountains, where we first knew that something was desperately wrong with Brennan, felt like a place to visit out of obligation, versus pleasure. I would go hunting and fishing solely out of what I perceived to be a duty to the boys. And then, when it looked like Brennan’s chimerism was slipping, I felt whatever fragile progress I had made to be falling apart. I say all this with extreme sensitivity to my fellow pediatric cancer parents. This is how it affected(s) me, and my kid lived.
But when summer started and Brennan’s energy picked up, so to did I. The public response to the book was overwhelmingly satisfying and flattering and, with the three months that Tara and I pieced together to tell our story and say “thanks” to hundreds of friends and new acquaintances, the PTSD symptoms began to become more intermittent than constant. The book, the music and the road collectively offered a toolbox for me to gradually piece my world back together similar to the toolbox that many soldiers from the Middle East are creating to deal with their PTSD in returning to the states.
As I write this, Tara and Brennan are in Memphis. It is the 5th anniversary of Brennan’s 4th transplant, and his is currently undergoing every possible test to ensure that his remission is solid and that the after effects relating to his osteopenia, cataracts, pulmonary issues and damage to his hippocampus are being managed properly and healing. Indeed, just this afternoon we received word that the MRD (minimal residual disease) study shows that is remission IS STABLE and that he has defied the odds yet again and made it to the all important five-year mark in good shape and good spirits. In short, he is awesome! In short, the boys and Tara are awesome. In short, I am getting there. And, in short, we still firmly believe in the Possibilities.
NTS
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You’re right Turner. You are ALL awesome. We love you!
You are awesome!
Turner, I’m grateful that you continue to give us real and not “prettified” glimpses into the fear, joy and relief you continue to experience as a family. Your last sentence in the next to last paragraph jumped out at me. My peers from the Vietnam”police action” learned that good memories gradually replace the bad ones. It takes time and unfortunately TBI and PTSD often make it impossible for this replacement to occur. It made me happier than I can communicate to see this is happening for you. I often questioned why I couldn’t shake the damage (AKA Parasites) that glommed on to me as a nine year old kid. Three years ago, while I was watching and praying along with you during Brennan’s dark night – while simultaneously watching my life’s work crumble I experienced what you’ll understand as miraculous. Fifty years after the parasites attached to me they were gone. I don’t pretend to understand God’s timing, but I came to know that He had walked alongside me for 50 years and when all the issues converged He was there. Thanks again for all you are doing.
Thank you David. I am honored to have you as a friend
Great read. I just got out of the seat of a truck that has been moving from Augusta Ga to Starkville Ms at rapid pace. My father was diagnosed a week and a half ago with colon and liver cancer. I feel lost. I feel drained, I feel I can please no one as everywhere I feel l need to be is not in this hospital room. But the love a son has for his father has great power. I sit in solitude hour after hour and look at him with the plethora of tubes coming from his body. He is miserable, in pain, broken down, and stripped of all pride. But when he is awake for a few precious seconds he says, Pat, I am glad you are hear, I am proud of you. So I continue to sit rejuvenated in this hospital in solitude.
I had no idea of what you were going through, Turner. Thank you for sharing and helping me appreciate my blessings. I know you and your family will always press on to meet any challenge. Yea for Brennan!
Awesome is the word – in a truly human, grounded way. Thanks for letting us into the world of possibilities.
Press On!