Colin Loves Tractors Follow Colin's progress through treatment for a brain tumor

August 27, 2015

Memphis Sunrise

The day before neurosurgery is a frustrating combination of interminable waiting punctuated by the frantic urgency to act, all conducted without benefit of even the vaguest structure. It stands in sharp contrast to the dense scheduling of one of our typical days at St. Jude, spent shuttling from one meticulously scheduled slot to another (minus E Clinic, the clinic for brain tumor patients, which is beholden to no clock born of human devising), and it is endemic of the inpatient environment we have encountered at any hospital. Already in the system, it is a simple matter to add another test or procedure through hidden incantations conducted in the obscurity of the famed work room. However, this comes with a price; upon admission, the patient becomes the sworn legal property of the hospital and therefore liege to its whims of timing.

Being seasoned in the ways of the hospital environs, I knew ahead of time the importance of capturing a few moments of sanity before plunging into the inexplicable time sink of boring chaos that awaited. At 5 am, I gave Colin his typical medication regimen and set off for a run. During Colin’s original high-dose chemotherapy, I ran the 5K of the Memphis St. Jude Marathon and trained at very odd hours on the one-mile loop that wends around the campus.

This morning, I loped out of the Tri Delta House on the path to a dusky sunrise. One long stretch faces east, where I could see the layer of pale pink-tan settled at the bottom of a brightening sky, a lone brilliant star hanging overhead. It must have been a planet, though which I have no idea. The campus was quiescent, with few people walking about. Behind me, it was still night, with the campus remaining veiled from the day in the dimness of twilight.

I was having trouble discerning the exact path of the loop, despite my familiarity with it from many repetitions nearly six years ago. The cycles of improvements and general construction have altered the sidewalks, which have not all retained the original distance and direction markers. In my confusion, I lost sight of the lone beacon of that planet. When I tried to find it again, it was gone, swallowed by the burgeoning day.

The buildings at St. Jude are a stony pink, a color that blends into that shade of sunrise. I don’t know if this was intentional or not, to integrate those particular hues (especially given Danny Thomas’s famous quote: No child should die in the dawn of life), but I was acutely aware of it on that first loop around campus. On my way towards the west, the sky was an anonymous darkly grey-blue, its shade echoed in the high windows of the research tower.

Another loop revealed different observations and a different experience of the same path; the sky had lightened significantly, drowning out any possibility of me finding the signal of that planet. At one point, a thick spicy floweriness abruptly struck my olfactory senses, enough so that I turned to see which tree or bush had exuded that perfume. I had been greeting passers by, and this loop brought me many more good mornings, including from a gaggle of construction workers. One responded with a heavily inflected and somewhat surprised “good morning” that was so distinctive that it ought to have been recorded and used in a movie.

By the third loop, I was overwhelmed with the bright flash of lantana, and the campus was abuzz with people arriving for shift change, lines of cars approaching the various parking garages. The day had arrived and I grasped, passing by the Danny Thomas Pavilion, that we were one large step nearer to the elucidation of the disease lurking in  Colin’s brain and the path that would lie ahead.

We have always lived on the edge: the edge of survivability; the edge of science; the edge of a child’s expected ability to recover. Colin has always danced on that edge with unconscious ease while those around him have breathlessly felt the vertigo in their own hearts, swallowing that fear. Colin is the boy with good bad luck. He is the one who has beaten the odds.

I embrace all of this, yet I cannot bank on it. Prepare for the worst and hope for the best, I suppose. We remain in a place of hope, but reality dictates that we stop looking in the side view mirror; objects may be closer than they appear. Distant, still, though it is amazing how quickly that gap can be closed when dealing with wildfire.

The growing understanding of the role of the immune system and cancer conceives various stages of the growing imbalance between the two, with an important hallmark of “immune escape” coming with metastasis, the evolutionary moment where the cancer cells learn to break off from the parent cluster and create the insidious seeds that infiltrate other parts of the body. On one side of this milestone, as in the wonderful years of remission, we luxuriated in that breathing room. The appearance of three new lesions in the right lateral ventricle sent the clear message that we had definitively crossed a boundary into a place redolent with greater tension and the need for swift action.

Same Old, Same Old

Fortunately, today’s MRI told us that we were looking at the same unpleasant but potentially tenable situation that thrust itself in our faces nearly two weeks ago. The third questionable blip of tumor is on Dr. Boop’s radar and he will target them all for removal tomorrow morning. The surgical plan is to evict the triad through a single burr hole, if possible. Otherwise, it might require two holes. The removal of these three unwanted interlopers is just the beginning, but we also need to know if there is a silent explosion of disease that doesn’t appear on the MRI.

It was a bittersweet reunion with the staff who took care of Colin in March for the planning MRI, who were both happy to see our familiar faces and unhappy for the reason for our return. They remembered us as well as Colin’s pleasant disposition and unusual predilection for MRIs. We recalled his reluctance to walk down the hall with his backside exposed in the tiny blue gown, with several very charmed women holding a blanket around him to shield him from prying eyes. We repeated this exercise, though he may not have remembered his earlier sensitivity, with some delight for his adorable now-eight-year-old modesty.

In addition to the critical craniotomy, Colin will also get his port changed out; the last one stopped returning blood and gave us more than a small measure of anxiety in its monitoring and management. We were content living with the half-functional device, but with a greater degree of uncertainty in the future, we decided to take advantage of the opportunity to put in a fresh one, handed over like papal tools on an ornately gilded pillow from Ginger, our nurse practitioner at St. Jude, to Tracy, Dr. Boop’s nurse. In preparation for this, he had an ultrasound of his blood vessels to make sure he didn’t have a clot. With a clean bill of health this afternoon, we were able to sign the consent for that procedure, which will be tacked on after the brain surgery.

The Comfort of Old Friends

We couldn’t be in better hands. Not only is Dr. Boop a fine surgeon, arguably the finest in his field for this disease, but we are in the familiar environs of LeBonheur, St. Jude and, much more generally, Memphis. We love this soulful city and the generous hearts of the many people who have adopted our entire family. It feels like home, a funny old armchair in grandma’s house that we reluctantly sat in but found surprisingly comfortable before falling asleep in it for a while, book held open to a page on one arm.

This is the first surgery where Aidan has been a part of the process, something that we easily forget as we, as parents, are on number five. After long months of the boys wrangling with each other, it has been heart warming to watch them be purely sweet with each other, Aidan feeding Colin pecan pie after his MRI and Colin writing “I [heart] Aidanin the middle of a drawing. We have discovered with some chagrin that the cure for sibling rivalry is impending brain surgery.

We are extremely grateful for the support and pure love radiated to Colin and our family. Colin will be first case tomorrow (my favorite!) and we will get updates from Dr. Boop as well as a debriefing when he is done. At this point, the expectation is that recovery from this procedure will be similar to the last, which is to say extremely easy. The decisions that follow will certainly not be, but this is one of the times where we need to stay focused only on the ground in front of our toes rather than trying to shift our view out closer to the horizon.

 

 

8 Comments »

  1. Love and prayers for Colin and his most loving incredible family. Xoxo

    Comment by Valerie Raymonds — August 27, 2015 @ 1:33 am

  2. I read religiously tracking back now and again. You capture this experience so vividly. May the universe guide Dr Boops hand to clearing all possible disease.
    Love to you all. A special love to Aiden for being the exact brother designed for Colin!

    Comment by Sinola — August 27, 2015 @ 4:05 am

  3. Godspeed, kiss Colin for me please, tell him his old farty uncle loves him!

    Comment by Mark Hayward — August 27, 2015 @ 8:19 am

  4. Love and prayers

    Comment by Tammy Wright/Jake Wright-Piekarski — August 27, 2015 @ 8:58 am

  5. Hey — thinking of you all today. Hoping for the best news.

    Comment by Karen Graubart — August 27, 2015 @ 11:51 am

  6. My prayers and thoughts are with you today. You are an amazing and resilient family and I know you will handle any outcome with strength and grace. Colin and Aiden are both amazing kids; you are lucky to have them in your family and they are lucky to have you and Ian.
    xoxoxo

    Comment by Diana — August 27, 2015 @ 12:39 pm

  7. Sending super Colin and his super family all of our love.

    Comment by B Taylor — August 27, 2015 @ 1:25 pm

  8. Yes, looks like it was Venus…Love planet. Sending you our love as well.

    Comment by Paul Warkentin — August 27, 2015 @ 5:11 pm

RSS feed for comments on this post. TrackBack URL

Leave a comment

*

Powered by WordPress