Awesome

Unpublished Blog Post from 2016

Author’s Note: I have a countless number of half finished blog posts that were abandoned for any number of reasons.  In digging through my files, I found this one from the fall of 2016, originally entitled “PTSD and GHVD.” PTSD at that time referred to me, struggling to find my balance after a brutal 5+ years. GHVD referred to Brennan’s fight with Graft vs Host disease at the time (which he has mastered!). But considering the post was about Brennan, I have changed it to “Awesome” for our lives today.

As many readers know, Brennan graduated from Aquinas High School this past June; and while I have many blanks to fill in between the subject matter of this post and today, to think that he has had the mettle to accomplish what he has accomplished is nothing short of Awesome. And maybe the fact that it was my PTSD that prevented me from posting this originally, I find it awesome to have reconnected with these thoughts 

November, 2016:

During my many “book talks,” someone eventually asks the question, “so how is everyone doing now?”   My reflexive one-liner response typically is, “awesome” But to the observant participant, there is a noticeable pause.  I am now approaching fifty “talks;” so, one would think my canned response is locked and loaded. The honest response… well, let’s just saw that no one has time for that. And I am not prepared to offer it.

I find myself sitting at my laptop today trying to articulate an honest response; so bear with me while I work through the background behind it. It all begins with the Band of Brothers, for which there are five members ( if I can be so bold as to include me and Tara). Since the Band was formed in January 2009, each of us has transitioned in his or her own way and on our own time.   Most folks, of course, are interested in Brennan. After all, he is the star of the story.  His role is that of Mal. Dick Winters (Distinguished Service Cross recipient and primary Character in Stephen Ambrose’s The Band of Brothers). The real Major Winters was a guy who, while not necessarily this highest ranking member by title, was the true hero who’s courage and example defined “The Band.”

There is no doubt that Brennan has been blessed with a rare spirit that is both magnetic in character a divine in nature. So when choosing the “awesome” response in the context of him (what he is done and continues to do), this is neither an exaggeration or a canned anything. It’s just the truth.

So let’s break that down to how I am in the context of Storyteller. Brennan is looking in no other direction but forward. If anything, he is growing tired of me continuing to talk about his miraculous cancer journey; and I don’t blame him. As the Dad, not only has it taken me more time than has gone under the bridge to date to decompress, I still have to keep one hand on the alarm switch.

Brennan takes MMF (mycophenolate), a chemo drug, orally as an immunosuppressant medication. This type of drug intends to prevent any immune response (a cold, virus, sunburn, rash, or really anything) that could get out of hand and trigger a potentially fatal response. To those of you who have read the book, you will recall that GVHD, is a chronic side effect of having had one’s immune system replaced by someone else’s. A simple sunburn could trigger the new immune system to overreacts and begins to attack the vital organs of the host (the bone marrow donor). 

Needless to say, a daily dose of chemo does not bode well for the early bird.  The school day morning are met with a languid rolling of the eyes and a listless, “I am sorry Daddy, I can’t get up.”

Yet despite the tough mornings and more than a sufficiency of exhaustion, Brennan has Miraculously (and charitably) remained with the same class he left in 2009. He continues to miss more school days than not. An, havin missed so much of his foundational education (Math/Grammar), the uphill battle gets steeper by the year. His peers continue to move along at their customary pace while Brennan, although moving forward, presses on at a rate crucially slower than the rest.  Still, he hangs in.  Realistically, he should drop back at least three grades to be at a commensurate peer level. Yet, those of you who know him understand that his self esteem is his biggest tool; and we feel we can feed that better keeping his with his friends. Through a combination of another of God’s many miracles, and a sympathetically cooperative school, he has managed see high school with many of his first grade classmates as a reality.  

Earlier in the year, however, Tara and I faced what appeared to be the most frightening news of his post 4th transplant rehabilitation.  His annual February check-up (represented the primary annual barrage of biopsies and tests, performed at the anniversary of the fourth transplant) showed us 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% donor cells, Brennan’s had slipped to 98%.  Even 1% of his own immune system is too large. Four bone marrow transplants have proven that even a microscopic part of his original immunes system could be cancerous.  Returning to St Jude in April in search of a game plan (whether to address the problem with less immune suppressants, thereby allowing the new immune system to take firmer root) we were reminded that either relapse or Chronic GVHD were too close for comfort. 

The risk, of less immunosuppressants is 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).  Nothing awesome here. Just fear.

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. So the St Jude team agreed to reduce the immune suppressant drugs but 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  iron overload).  With huge sense of caution and a mild sense of relief, we embarked upon a path no broader than a tightrope but comforted that the rope was, at least taught.

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 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 the “little guys” 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.  Returning renewed, taller and confident, he is now back in school, having hardly missed a day, and appears to be on the clearest path towards conventional normalcy yet.  

So, to finally answer the question… he is “awesome.”