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

December 4, 2015

The Magic in the Mundane

Filed under: Death,Local Color,Perspective on Cancer — Mom @ 10:37 pm

Sunlight glimmers on imperfections in the plane window. I call them imperfections, though I suspect they are fractures in the plastic from the stress of flight, the long parallel tracks streaming down at an angle in silver lines like incandescent rain drops. There is no rain, of course, high above the field of white puffs below, in what is someone else’s pale blue sky, dotted with clouds on a bright day.

This is the first leg of a new adventure, trading a damp gray morning for three ascents into the heavens to escape the mortal weather below. As idyllic as it may seem from the comfort of a human-tailored climate, what looks like a lovely day in terrestrial terms outside of the thin skin of the plane would turn out to be a horror of frozen temperatures, searing sunlight, and an unbreathable atmosphere.

We are a legion of Icaruses (Icari?) casually tempting fate every time we rise in our metal capsules into the realm of the gods. The act has become so routine that we reduce it to a litany of inconveniences: shoe removal; long lines; the tense anxiety of the middle seat; the inevitable disruptions and delays, all fashionable to grumble about with impatience and frustration. The habituation to expedite everything has stripped us of the wonder of our daily lives and even rarer marvels like air flight.

To look down on the landscape, the patchwork quilt of farms and settlements spread out below, it feels like we’ve conquered the world, but that couldn’t be further from the truth. It is only with great arrogance that we could imagine we’ve teased out the mysteries of the universe, or even our own planet or our own bodies, though we’ve teemed across the planet and routinely soar above its surface. Most of what there is to know will remain unknown not just to our children or the next hundred generations that follow but to humanity as a whole before we become another species marked with an asterisk in the annals of planetary history (*extinct).

Musings on the Science of Cancer

Today, we stand at the cusp of understanding the disease that is overtaking Colin’s brain, squeezing him out in favor of its own virulent greed for real estate. It is a part of him gone renegade, taken hold in the compartment of the body that ironically contains our core essence yet also receives the least aggressive immune monitoring. The rigid encasing of our skulls and obscure yet intricate contents of the bowl of Jell-O it holds make swelling dangerous. The immune system stands down unless truly needed, creating a particularly vulnerable surveillance and response gap that allows cancer to take up residence and proliferate.

The common understanding of this disease is driven by an outdated model that describes cells that simply grow out of control, dividing wildly and unstoppably. The emerging science tells us that cancer is prevalent, even ubiquitous, within all of us, but is tempered by the innate monitoring of the immune system. Even those who are “cured” of cancer may not be rid of it entirely. We imagine that chemotherapy and radiation in their terrible ravaging gain a Pyrrhic victory over these wayward cells, but in fact many long-term survivors likely harbor the disease at a manageable level where the immune system can again be effective in keeping cancer in check. We know this happens in some cases of organ transplant recipients who get organs from individuals with a distant history of cancer. In new bodies bathed in immune suppressive medication, the organs have been known to bring with them the long-dormant cancers from their former owners, sprouting anew in a fresh and vulnerable host.

We have long known that the immune system plays a role in controlling cancer but have been stymied in our understanding of that mechanism and a strategy to use it to effect a cure. The fact is that the interplay between cancer and our bodies is a complex and incompletely understood dance as each tries to outwit the other. We now believe that the disease has its own evolution as it relates to its ability to circumvent the immune system and learn how to travel beyond its own confines. In practice, we understand these stages as lone, early stage tumors that sometimes develop metastases, though not all cancers seem capable of becoming that canny. Before cells start clumping into tumors, there is a phase of microscopic activity that can equilibriate into a silent standoff. However, the cancer can implement strategies that overwhelm the immune system and that equilibrium goes cockeyed.

Another revelation in my study of the science of oncology is that tumors themselves aren’t just grotesque lumps of replicated flesh like a teleportation experiment gone awry in a science fiction movie – poor Igor is now a shapeless pile of gray goo in Chamber 2, perhaps expelling one last bubble of life before getting washed down a grate set into the concrete laboratory floor. Tumors represent an intricate system of defenses that protect the eloquent mechanism of growth that pushes the boundaries further as the cancer expands and, in some respects, explores its host. Much of the outer layers are a cloaking device concealing the true nature of the tumor from the immune system, which would otherwise attack it. The blood supply is commandeered from the body, taught to feed the perfidious houseguest.

Perhaps most insidiously of all, successful cancers learn how to subvert elements of the immune system to its own purposes. This comes in the form of direct suppression as well as the reprogramming of immune bodies that are supposed to be helping. Macrophages break down dead cancer cells and teach the immune system what to look for, but cancers can also use those very bodies (and others) to suppress the immune system’s ability to respond. The inoculation process can even be counterproductive, with the immune system actively avoiding cancer cell markers.

With immunotherapy being such a buzz word in oncology, many opportunists are quick to promote immune boosting measures as a way of preventing or beating back the disease. However, it is not necessarily so simple, since the tumors create a local environment that is different from the rest of the body with native immune cells perverted to their own purposes. As counterintuitive as it may seem, immune suppression can actually be useful in obliterating those cells that have been reprogrammed by the unwanted interloper.

Another category of research that has shown some promise yet does not hold the keys to the kingdom is targeted therapy, like the medication Colin is currently on, typically bringing much milder side effects than chemotherapy. Medications that aim directly at pathways that certain cancers may use can either thwart further growth or cause them to wither. This, too, is another red herring as a panacea, as cancer is often wily enough to adapt around individual pathways that are blocked.

From what we see in our evolving understanding of these diseases, the answer for the vast bulk of cancers will come in the form of combination therapy, with a multi-pronged approach that limits the cancer in its ability to evade efforts to cut off its many limbs while also attacking its various mechanisms. Colin has stood on the knife’s edge of progress, kissing the boundary of research and our best guesses on how to forestall the complex array of diseases that we call cancer. The brain presents unusual challenges because of its location and its predilection for a muted immune response; immune-spurring strategies bring with them the risk of dangerous swelling, and treatments that work vigorously bear very real risks in this department.

Door Number One or Door Number Two

Returning to the point of what is called immune escape, or the evolutionary process by which a particular cancer learns how to spread its wings within its host, this is exactly the issue that we faced back in January. The presence of that lone tumor so far from the original treatment site meant one of two things; though one was more likely (true metastasis), the other was more appealing (a long-dormant cell hiding out since the original treatment, possibly flung out to sea in the course of the various surgeries, too inert to take up and therefore respond to chemotherapy and not yet spurred to action). The latter idea was not unreasonable, as there have been cases of patients with similar relapsed disease patterns where repeat recurrences suggest something of the sort, where a strategy of plucking new lesions results in reasonable remission periods.

However, this was clearly not the case for Colin. The behavior of his disease demonstrates that these cells found out how to become dandelion seeds, casting themselves to the liquid winds of his central nervous system. Did those seeds originate with Beta, the lesion we found at the end of last January? These are impossible speculations, yet it still is tempting to look back at those moments and decisions and wonder if we could have changed the outcome or trajectory.

Going back to the radiation question, it’s possible it would have bought more time in remission, but at what cost? The saying is that hindsight is 20-20, but we lack such clarity here. We are satisfied that the unlikely set of circumstances that brought us to today gives Colin the best quality of life we can muster without being saddled with regrets regarding overtreatment.

We are certainly confident that the everolimus is a good option for Colin, since we know many kids who have taken it with minimal side effects yet decent results. The trip to Dallas was a purely administrative one: paperwork, blood tests, a few uploaded MRIs, and $10,000 of medication in my backpack (we have an extra week’s supply to work around the holidays, so we don’t return until the beginning of January). The real nail biter will be on January 25, when we find out if the everolimus has done its job and Colin is cleared for another two months’ supply.

Dallas has been inundated with rain, and that Sunday afternoon we arrived was no exception. From the air, the water laden clouds were a broad, soft plain that looked smooth from a distance but evinced wisps upon closer inspection. It was like a movie setting for heaven, and perhaps I’m thinking of Heaven Can Wait or something along those lines; I nearly expected Warren Beatty to appear in the distance as we slid gently into the embracing whiteness.

The Texas stereotype is alive and well in Dallas, where everything seems outsized, including its swollen river, which had overcome its banks and swallowed the bases of trees. To a newcomer, it wasn’t obvious that it was unusual for the river to completely span the banks under the bridges if it weren’t for the thick trunks submerged unnaturally in the roiling effluence.

The Ronald McDonald House is beautiful, centered around a great room that one would expect to see in a luxe resort, complete with rivet-studded leather couches on a flagstone floor and gracefully curved ironwork reminiscent of longhorns. It was all surprisingly homey, and groups from Michael’s and Macy’s came during our stay to decorate for Christmas, though we weren’t there long enough to see the full effect.

The children’s hospital has a phenomenal train display replete with characters from all kinds of movies, TV shows, and video games, though the lines among these things have been admittedly blurred. The Teenaged Mutant Ninja Turtles hung suspended over the Lilliputian city near Batman and various superheroes. My favorite was Darth Vader and storm troopers on the back of the train, while Colin laughed uproariously at a Pikachu perched at a mischievous cant behind the locomotive trundling around in a different section of the tripartite two-story display. Our brief welcome to Dallas was topped by lunch with our old friend Julie and our new friend Allison.

Preparations

In addition to the flurry of activity around getting to Texas as quickly as possible, we have been making progress on the palliative front. As sad as it is, it also feels good to contemplate all of these issues and have a long list of questions to get answered at a time when we still have a bit of that: time.

Time has a different feel to it now, both an acceleration and a forced slowness in which we must pause and allow things to play out as they will. We are in the grips of natural processes, both of the disease itself and of the psyches of two children who depend on us for the framework of their lives. Parenting changes during this time as it relates to both boys, though especially regarding Colin.

Flying back from Dallas, Colin was quite happy to have as a seatmate a young lady who was willing to engage him in conversation for a while until she begged off for a nap. He gave her a long dissertation on the Lego Dimensions game as well as Minecraft, being attentive to her ignorance in these matters to explain things carefully. He also shared with her a secret, that dragons are real. They are lizards, he explained, large lizards that lived long ago. He also confided in her, “I’m preparing for…” but I couldn’t quite make out what he said with the noise of the plane. I’m fairly certain that he said death. I don’t know that he meant it as an imminent matter, but it is certainly on his mind. I had the sudden insight that my schizophrenic mother may have put this thought in his head, but the origins don’t matter as much as the fact of it and our need to engage and reassure him in his anxieties. When I asked him later what he had told her he was preparing for, he initially couldn’t recall. When I suggested death, he replied, “nothing” so evasively that I’m sure I was right in the first place.

I don’t think that contemplating death is unusual for children, and I recall doing so in my own youth as well as my perusal of my mother’s eclectic collection of bathroom books that included volumes from Arthur Conan Doyle (about the supernatural, not Sherlock Holmes, the latter which adorned my own shelf) and Kubler-Ross’s On Death and Dying. Children yearn for certainty in all things, yet this is an area where the best anybody can offer is a belief system wrapped around conjecture. This is a deeply personal matter that most of us have time to reconcile for ourselves, but we can’t demand the same of someone who hasn’t even reached double digits in years yet. In the end, the primal reassurance of our presence and love are the last gifts that we will give Colin, and that knowledge will inform how we support him as changes in his body spur him to reach for steadiness and an unmoving center.

We returned home in darkness, though even the daytime flights were obscured in fog and offered less to gaze at amid the hypnotic hum of the plane. Colin went to school the morning after our return, but we had to start asking ourselves what exactly we hoped for him to get out of the experience. There is no more pressure for Colin to learn math or acquire skills that provide the foundation of independence. However, it also feels wrong to let go of everything we have taught him is important and the exercise of his intellect, which he enjoys.

Colin is clever and bright, even if the mechanisms that express those ideas are a bit tangled and slow. He derives satisfaction from expressing his thoughts and wit and sharing ideas that come from his own unique perspective. School gives him opportunities that he wouldn’t otherwise have and it forces him to interact with the outside world, which both intimidates and satisfies him. We seek experiences for him in the form of a wish trip and other outings, but the most valuable moments most likely will come in the setting of normal day-to-day life. There is no doubt we feel free to take him out of school for one thing or another and to allow him the luxury of sleeping in when he is tired, but we also see the importance of the unglamorous rhythm of life in third grade.

It is easy to focus energy on meeting a particular celebrity or Disney princess in order to create a special and precious memory, yet the alchemy of magic often takes places in the drab corridors of school or an otherwise unremarkable playground. After a maple leaf fell on his lap during the walk to school, Colin latched onto the idea of making maple syrup from a tree. We “planted” a maple seed in the backyard and he now watches for it to grow so he can see his project come together. I will always search for the divot that we removed in an open patch of grass and remember his delight in announcing that he would make his riches by selling a huge jug of syrup for all of four dollars.

The magic moments happen every day. They arrive with the joy in Colin’s voice when he comes home from school, exclaims, “Mommy!” and throws his arms around me. They land on my heart when he collects my kisses on his round cheeks as I ask him about his day at school.

We let the magic in every day unfold and try to capture what we can, though it is impossible to bottle it all. We aren’t creating a museum but are bearing witness to a life well lived and are doing what we can to keep it that way.

 

 

 

 

6 Comments »

  1. Thank you for sharing your journey. I imagine how difficult it is. Enjoy every day. Happy holidays!

    Comment by Marilyn Whitney — December 5, 2015 @ 9:31 am

  2. All of you are in my thoughts, always.

    Comment by Delia — December 5, 2015 @ 9:43 am

  3. We’ve never met, but I was given your site 5 years ago when we were facing a recurrence of brain cancer with my daughter and we were trying to decide between Proton and Photon treatment. I’m so sorry you are facing this with Colin. He is an exceptional boy with exceptional parents. Your writing moves me to tears. Please know that we are praying for Colin – praying for that miracle. We’re also praying for peace for his brother and of course both of you.

    Comment by MIchelle — December 7, 2015 @ 3:23 pm

  4. My thoughts and prayers are with all of you as you once again face this demon known as cancer. Love to you all!

    Comment by Angela E — December 9, 2015 @ 11:34 am

  5. You are the most gifted writer. What a gift you are giving all of us by so profoundly writing about this unspeakable journey. My prayers are with you to give you strength and peace. Many blessings on you and your family and especially Colin this Christmastide.

    Comment by Laurie — December 16, 2015 @ 11:26 am

  6. We keep all of you in our prayers.. I do believe in miracles.. and I believe your son is the miracle.. a beautiful soul.. for all .. no matter the amount of time .. so happy to have every moment.. even hard ones I’m sure.. every laugh every tear.. Im wishing you all comfort and Love and this best Christmas together.. Always remember those that are in our Hearts.. are never ever.. really very far apart…

    Comment by Brandy McClarnon — December 18, 2015 @ 6:44 pm

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