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

September 11, 2015

Decisionation

The sky was muddy, a diffuse and dark reddish brown the disappointing color of light pollution, not an emerging dawn. It was no kind of sky within which to find clarity. Two days before, a sharp waning crescent hung in the sky, a cat’s claw poised to grab Venus, which hung like a winking fat jewel in the eastern sky. Then, Orion had greeted me abruptly in the south when I opened my door, the only constellation I could rightly make out in a tepid but clear sky. In the course of a short run, that bright figure faded into barely perceptible pinpricks, but the hunter still stood vigil.

On a day when I sought familiar figures in the heavens, I instead found murky flatness, and it was no surprise that this unappetizing soup eventually evolved into the tufted gray carpet of clouds that typifies Ithaca. The day before, I received a characteristically short email from Dr. Gajjar: “The median duration of control with RT after resection of recurrent Ependymoma with 1 q gain is approx. 24 months.”

The qualifier is that the number of patients was very small (9), and we took RT to mean CSI, as this was his data quest.  I didn’t press him on it, as he certainly knew the situation. To be honest, 24 months was more than I was expecting from this population. At no point have I encountered a set of data that suddenly painted a clear picture of the path we ought to take. All roads lead to heartache.

I Want to Be Your Sledgehammer

I have been reluctant to embrace the brutal, deliberate killing potential of CSI. It is a sledgehammer in a quiver filled with blunt weaponry, but it is the bluntest and most heavily weighted of them all. To us, it does not offer the promise of cure; it is a palliative measure that brings with it a world of problems. However, it could also bring years free of tumor, years in which Colin could be whatever version of him would survive that photonic assault.

To be clear, not all children who go through CSI suffer neurological (and other) devastation. Plenty do well enough, and the factors that influence this are many, varied, and ultimately unpredictable. Prior irradiation, yes. Existing neurological deficits, yes. The list goes on, and while there are many boxes ticked in the negative category, there are also some obvious positives. At 8, Colin is not quite as vulnerable to the neurological devastation of CSI as he would be at 4, though not as robust as he would be at 12; to be more nauseatingly honest, he will probably not survive long enough for it to matter. His previous irradiation took place more than five years ago, giving him ample distance from the last time we released the photon torpedoes on his gray matter, though in a much better defined assault that gave proper deference to the parts that make Colin Colin.

Conceptually, I have a difficult time with the idea of irradiating Colin’s whole damned cranium and spine. It’s a barbaric practice, though refined through modern technology to fit desired target volumes, enhanced to treat tumor beds, etc. This is not your mother’s craniospinal irradiation (I hope your mother didn’t have craniospinal irradiation), but it still brings with it a heaping portion of anxiety over the potential side effects and toxicity. Looking at a planning map of CSI is daunting and sickening and it makes one want to turn and run. I face it because I force myself to stare into the abyss when challenged with impossible choices. That elongated kidney bean outlined in yellow? The thyroid. Well, mow it down. And that is only a casual bystander in the landscape of CSI, a throwaway easily replace d with a higher dosage of a daily pill Colin already takes as the result of his first run-in with radiation.

I could but will spare you from the tortured logic stream that led me to the conclusion that we did, indeed, need to pursue CSI. For the week we were home and the boys started school, I was convinced that this was the wrong path with an unacceptable loss in quality of life for our entire family. I carried with me the horror in the pit of my stomach that I felt when I left Colin for his simulation CT scan, an ingrained knowledge that I could not impose this upon my child.

Lilo or Stitch?

However, I have also seen him go to school, relishing the first days of third grade, and trundle around the house, often seeking to watch his latest obsession, Lilo & Stitch and its various spin-offs. Ian explained to me that Colin identified with Lilo, the oddball little girl who makes nothing of befriending the odd otherworldly monster who falls into her midst and his cadre of companions. I think not; Colin is Stitch, the failed monster who sought out the love of a little girl who manages to relish his quirky abilities and ignore the strangeness that would be off putting to the rest of the world.

Colin has already been distorted by this disease, ependymoma. To deny it would be to deny the very nature of brain tumors and the vicious but necessary courses of treatment we must pursue to banish them. Years ago, in the PICU at Westchester’s Maria Fareri Children’s Hospital, I forced myself to cast away my goals and expectations for this little boy I thought I was to shepherd into adulthood. None of those ideas mattered any more.

What mattered most was the essence of motherhood, an immediacy of need and love. The focus shifted from the goal of a distant future to that of survival, and this is a critical turning point for any parent. Just. Live. I remember the night before his first craniotomy, running my finger down the spot on the back of his neck where I knew the scalpel would dig in and find its first path in the quest for the foreign invader that hid behind the wall of bone and dura. It was pristine, still, that tender neck, and I would never see it in that innocent condition again, I mused.

Today, I run my finger down the same indentation, now with the caterpillar of flesh that is raised into a bumpy line, and I relish it. Colin is changed but not necessarily diminished by the crazy course that has brought us back to squares. He bears the scars of the many procedures, the brushes against darkness and harrowing risk, but he has a prevailing and forceful spirit that knows its own will.

Colin is strong and resilient, but he is showing the wear and tear of the return to the operating table and yet another proclamation that the doctors must do what they can to keep the cancer from coming back. We do not tell him, as we know, that this is a losing battle, that one day we will not be able to stem this tide. For now, it is an acceptable lie, a truth with an asterisk, and we accept it.

Two Years

Two years without having to go under the knife. Two years without a mounting list of deficits. I will take that, though we are fully aware that the “median duration of control” of 24 months is no promise of two years. I will take that, despite deficits that will push Colin further away from the midline of his peers. Within the embrace of a loving community, Colin’s Stitch will find an array of Lilos to enjoy his company and love him as he warrants, no matter what the radiation steals.

I went to bed, exhausted by the differential calculus of loss and gain, what is really loser’s math that yields the same result but along a different trajectory. What is the volume under the curve that represents the range of likely outcomes for Choice A? Choice B? For each of these, that line ultimately meets the x axis, a longer or slower decline with the same destination. Yes, Colin may represent an outlier, but we can’t manage his care as if we expect him to pull one of his old good back luck tricks yet again.

The decision to pursue CSI was neither reassuring nor settling, and I awoke awash in that uncertainty, having dreamt of radiation and drawn out conversations with oncologists in the interim. An early run, meeting the dawn, is often the thing to bring clarity, but I found only that murky darkness, arriving back home still picking my way gingerly along the potential minefield of the street. It is a foolhardy mission, running in inky darkness to the potential peril of fallen pinecones and worse, but I relied on the confidence of my familiarity of the route and dismissed those concerns.

Then Again…

It was only later at the end of my swim that I had an epiphany about remission periods of 24 months with gamma knife, the probable demonstration of the abscopal effect in such cases, that I rushed home and shook Ian awake. The abscopal effect! I need to look at the gamma knife data. What a fool, I thought. Ushering the boys off to their respective schools, I returned to the papers, to the data, and I pored through them again.

What I met was rank disappointment. There was nothing clear to me except for the fact that the best results for ependymoma with gamma knife come from higher total doses split into three parts. However, yet again, I could find no Colin in the data, no grouping of Colins that made me confident in a result. I had hoped that I would see metastatic control through those highly focal treatments, a suggestion in the data that the abscopal effect was at work, but I found nothing.

Yet again, the pendulum swung back in the other direction, with another visit to exhausted despondency in the nadir of that is painfully unconstructive. This it may be, but it is also my process, and it is the only means by which I will come through the other end of Colin’s adventure with ependymoma and not live with regret. If I watch him take his last breath, as I am likely to do, I will take another of my own and another and another, and I must do so without looking back at this moment and feeling like I could have done more.

Resolve is often not an epiphany, and it certainly hasn’t been for me. My mind will not stop turning if confronted with new data to absorb that demands reassessment of the decision. After dinner, Colin complained of a backache (he had a highly scrutinized scan of the spine less than a month ago). How does this change the decision? I asked Ian. The answer wasn’t obvious to me, and hopefully (presumably) it is a moot question, but these thoughts initiated a light cascade within my mind until I shut them down.

Memphis Bound, Redux

Today, finally, we reached the uncomfortable conclusion that CSI is Colin’s best option to remain his glorious self for as long as possible. The boys are not happy about this; both would much rather stay in school, and Aidan is expressing panic about falling behind on his schoolwork, though this is an easy piece to manage. We already have plans for him to go to the Montessori school that was his home during our first long stint in Memphis, and we are thinking of having Colin go a few times a week.

This is the third time this has happened to me, Aidan complained when I told him of our decision. I sympathized. Yes, Aidan, this is happening TO YOU, and I’m sorry. There is no point telling him the obvious, that we are trying to save* his brother’s life, a fact that diminishes his value in the world. The life of cancer treatment does that: siblings become lesser entities compared to the embattled and fragile cancer kid. I will not diminish the value of Aidan’s hurt or the validity of his statement.

Aidan is the one who will remain, physically unscathed but scarred, feeling always like he was a second class citizen except when his own freakish medical diagnosis demanded attention. I am a great medical mom but a mediocre enough regular mom, a little short on Pinteresty cleverness, brilliant lunch box ideas, and birthday party themes. The other day, Colin paid me the following compliment: “Mom, you’re really good at giving shots.”

Comments like those reassure me that my child will endure and, better than endure, he will thrive if it is at all possible. About a month/lifetime ago, I was driving Colin home from summer school therapy and he chirped, “I’m really happy with the way my life is going right now. I love my new house, my school, my friends.”

Colin is a happy guy, and I do believe he will carve that space out, given the breathing room, no matter what ills await him as a result of the assault on his brain. If we can stave off the tumors and keep a good routine, he will be fine – and more than fine. The plan is in place, with plane tickets whisking us to Memphis for appointments starting on the 28th of September; we will be home well before Thanksgiving and able to start back on the indoximod/temozolomide therapy within a few weeks, and back to our Augusta-oriented schedule.

Yearning for the Decisionator

This is, hands down, the hardest decision we have had to make over the past six-plus years. Removing the last piece of tumor was difficult, and we labored over it, but we were also pursuing the holy grail: durable remission. Managing the downward trajectory is much trickier, especially when you have Colin. He refuses to evince himself in the data. I could find no Colin anywhere, and I didn’t have the granular data from Dr. Gajjar to assess anyway.

Wherever I look, I can find no convincing evidence of a pattern of tumor behavior and response that looks like Colin. Yes, the 1q gain tells us something, but it does not tell me much about what to expect after so  many years of remission. I am, however, haunted by the ghostly apparitions of whatever cells and small tumors are in Colin’s ventricles but have failed to get large enough to see on imaging. This thought drives me to act a little more aggressively, just for the sake of beating a disease that I can’t see but know is there; this is our best time to act, if we’re willing to pull the trigger.

The unhelpful sky accompanied a cool morning, and I imagined it would be dreary all day. When it was time to go to Northeast Elementary and retrieve the boy, I opened the front door and a wall of heat washed back from the glass door. It was warm out, a light blue sky filled with gentle white clouds. The moodiness and unpleasantness of the morning had given way to a last taste of summer before fall encroached for real.

The core, Colin’s spirit and love, will persist. So we believe, and this is the thought that drives us forward in our pursuit of CSI. Those properties are the reward and the incentive. It is Colin himself, silently beseeching us to allow him the opportunity of the struggle rather than being forced into the gentle embrace of the abyss before his time. How can we help but listen to that somatic message, and to keep the sand from slipping through our fingers, when we are being asked not whether, but what path to take, as we choose how our son should die?

16 Comments »

  1. I am at a loss for words, but I am with you all whatever way you address this hard choice. I can never forget the love for Colin on that day you handed him to me as an infant, he fell asleep in my arms and melted my soul. He is a very special person and he’s been filling an important part of our lives, so for me, if he can live longer, if there’s a way, I want to see that.

    My love remains with hope and prayer.

    Comment by Mark Hayward — September 12, 2015 @ 4:24 am

  2. I have no words that would adequately describe what I’m feeling after reading this. I love Colin. I love your family. I hate cancer. I hate what cancer has done and continues to do to Colin and your family. Ok, I got that out! Now onto something else – I support your every decision and if there is anything I can do I will. If you ever need a traveling companion or just someone to talk with I’m here. I would love to spend time with you wherever, whenever possible. You are all in my daily thoughts and prayers. You and Ian are the strongest most incredible parents that I ever met. Sending you love across the miles.

    Comment by Val Raymonds — September 12, 2015 @ 5:32 am

  3. My heart was sinking as I read your update, and then I came to Colin’s quote that he loves the way his life is going and had to smile. What a kid! And what hard decisions you and Ian have face and will no doubt continue to face. You are doing a great job and your little good-bad luck boy has touched the hearts of so many people.
    Love, as always,
    Diana

    Comment by Diana — September 12, 2015 @ 8:01 am

  4. Your words are so beautiful, yet the story they weave is so heartbreaking, but you maintain some thread of hope for precious, precious time with your dear boy. You have given him that hope, and that is what makes you a superman. Love you. Praying hard every day for life and love and joy in each day.
    Alice

    Comment by Alice Williams — September 12, 2015 @ 8:25 am

  5. You are one of the strongest families I have ever come across. My continued prayers for you and your sons, your husband , and your entire family! May God continue to bless all of you and all of the doctors that grant Collin each day!

    Comment by Nanci — September 12, 2015 @ 9:11 am

  6. My heart breaks for all of you. I will keep you, Ian, Aidan,and Colin in my thoughts.

    Comment by Delia — September 12, 2015 @ 9:19 am

  7. Sending your family love, hope and prayers as you begin down this new path. Rest assured that Colin couldn’t have chosen better parents. You have examined every facet of this decision and have always put Colin’s best interests first. Although there is no way to remove this burden from you, I am hopeful that the support of family, friends and the many people Colin has touched will carry you through this. Keep loving life, Colin!

    Comment by Donna Aronne — September 12, 2015 @ 10:01 am

  8. I am always amazed at how grown up children who have had to experience what Colin has are. Your entire family is in my prayers.

    Comment by Michele Mullins — September 12, 2015 @ 12:03 pm

  9. I have no words,. Saddend by what may happen. Colin is an extrodondary child. Everyone loves him and all of you. We are behind you all the way and will pray everyday for his recovery.

    Comment by Vicky Lizotte — September 12, 2015 @ 1:59 pm

  10. Sending My prayers n hugs
    My heart aches as you make gut wrenching decisions that no mother of a 8 year old should ever have to make . But I am heartened by the fact that Colin and Aiden have such awesome parents .

    Comment by Agnes Gregory ( Mary Phelps mom ) — September 12, 2015 @ 6:14 pm

  11. How about hope? It is never over- until it’s over. Live for today, for no one can predict tomorrow. Even if you were not in this battle. Their spirit is strong as you witnessed every day. The spirit is willing but the flesh is weak. I pray for Collin and many other families everyday. A cure is coming I have been told- so hold on to your dreams, it’s not over until it’s over God bless

    Comment by Tony — September 13, 2015 @ 12:03 am

  12. However unfathomable and unpredictable the course, you all continue to navigate it and not just manage, but truly live. Our love and prayers for Colin, Aidan, you, and Ian, are unceasing.

    Comment by Kirsten Stone — September 13, 2015 @ 2:11 pm

  13. I don’t know what to say…..Colin you sweet beautiful boy

    Comment by Sinola — September 14, 2015 @ 2:02 am

  14. My heart cried after I read your unbelievable newest post. I think of Colin everyday loving him from the first time I met him. You are an incredible family. Prayers and love for all of you.

    Comment by Marty Logiurato — September 14, 2015 @ 12:59 pm

  15. My heart cried as I read your latest post. I loved Colin the first time I met his adorable little self and think of him everyday with love and prayers. The four of you are an incredible exceptional family.

    Comment by Marty Logiurato — September 14, 2015 @ 1:04 pm

  16. No parent should ever have to make these decisions. There is no second guessing. You are doing what is right for Colin and your family, lovingly and well-informed. We love and support you and we continue to have hope as long as there is breath.

    Comment by Pam, Jon & Leo — September 14, 2015 @ 10:11 pm

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