Autumn’s Arrival

Leaves are starting to fall off the yellow poplar in the back yard, a tree I love for its huge waxy-plastic seeming flowers and the wide tulip-shaped leaves. The season is starting to turn gently, the weather still summerly but the yellowing leaves around the neighborhood serving as a reminder that school starts next week and life returns to that normal cycle. Except that it doesn’t, not for us. We are currently on a decision making hold, but the cascade of events that will follow looms ahead heavily.

We Will All Be Received

The Paul Simon song about Graceland is certainly accurate for St. Jude patients bearing a recent wristband; we were well received at the home of the King. Colin had never been there and it was Dad’s birthday, so we made the inimitable Memphis pilgrimage to experience the extravagant decor of Elvis’s otherwise modestly proportioned home.

Colin was engrossed in the table-based tour but ended up inexplicably enamored of Elvis, asking to learn more about his life and accomplishments, and we all discovered memorable elements of the tour and grounds. It was a worthy diversion to proceed the more weighty events of the week.

In the wake of our meeting with Dr. Gajjar on Monday, we discussed the need to determine whether or not we would go the craniospinal irradiation (CSI) route ever; if so, we should proceed with that therapy next, not reserve it for future use. We pressed him on the topic of data on the 1q gain and our need to get a better handle on how that affects the likelihood that CSI might actually buy Colin any kind of remission, much less a durable one. If you look at Dr. Merchant’s retrospective data, there are certainly kids who fail CSI very quickly in addition to those that achieve durable remission.

Data, Please

Dr. Gajjar’s mission is to seek out information from those who are currently sifting through the data that includes that critical 1q gain data point. We already suspect that Dr. Foreman, who is in the midst of this work, is finding that these children’s tumors are radioresistant. Knowing that this datum is not part of Dr. Merchant’s statistics, this is enough to give us pause about embarking on therapy that would not be easy in the short-term and would certainly have longer lasting side effects.

On Monday morning, before our meeting with Dr. Gajjar, I brought Colin to the radiation oncology department for a simulation CT scan to prepare for radiation. He was his cheery self, happy to have a scan (he loves MRIs) and go to sleep, not having a clue what this all meant. They would apply a number of disappointingly small tattoos on various spots on his body to help calibrate his location for the sake of accuracy. I knew the nurse who took care of him in the induction room and we had a pleasant conversation, though much of it was about the gravity of Colin’s situation. She was sympathetic but not dour in the compassionate and practiced fashion of somebody involved with clinical care at a hospital where this situation is not uncommon.

At one point, she exploded with laughter from another room. She ran in to show me what she had seen, which was the radiation ID photo from Colin’s original stint down there. He looks gloriously unhappy, with a huge pout on his face and only a bit of fuzz on his otherwise bald head. They use these pictures as an additional identification verification, and this old one would certainly not do with the happy boy in front of us, so the tech made him smile for a new portrait. He complied willingly and the three of us cooed over his current demeanor while I contemplated darkly the significance of this particular photograph.

Radiation Reality

Despite the bonhomie and genuine mirth in the induction room, I left it feeling sick to my stomach, pervaded with apprehension. I could not do this to Colin. Before collecting bloodwork, some of it for the study, I had signed a consent form for the study, but nothing is set in stone until that gantry starts moving and photons spill forth in their path of measured destruction. I knew in my gut that this decision was premature and that I personally needed time to make sure we were adequately weighing consequences, benefits, and options before making the deep and irrevocable dive into CSI.

There is a funny song from the 1980s by the Bloodhound Gang, “Fire Water Burn,” which famously includes the refrain:

The roof, the roof, the roof is on fire.

We don’t need no water; let the motherfucker burn.

Burn, motherfucker, burn.

This is all that ran through my head as I ambled back upstairs, and I certainly didn’t remember the rest of the very amusing though not kid-friendly lyrics until I looked them up in composing this. The string of Pixies references is the best part, really (concluding with: “this honky’s going to heaven”). At the time, ignorant of the more entertaining elements of the song, I had sunk into a place where I could see only the scorched earth of CSI, which would likely rob him of functional hearing, among other things, and questioned the wisdom of pursuing this course.

Our meeting with Dr. Gajjar resulted in the clear determination that we needed to gather more information and have greater clarity before making a final decision. For the time being, the first CSI appointment is pushed off to near the end of the month. There is a meeting of ependymoma researchers in Toronto before then, and we may yield some information out of that, though I suspect that whatever we really need to know will arrive before then.

On Tuesday morning, I set out for a run in the early hours, while the sky was still dark with true night. The moon, waning from fullness, did the Dance of the Seven Veils with the spotty clouds. The various musings about our decision swirled in my head, or at least disturbed whatever thoughts I did have, since they rendered me incapable of counting as high as the fingers of one hand. I embarked on my final circuit of the campus thinking it was my third mile but realizing it was my fourth based on elapsed time and some complaints from my right ankle. Mental failings such as this have been common of late for me. Before we left for Memphis, I filled out passport applications for everybody but me (mine is still current) and scribed my own social security number instead of Ian’s and then got Colin’s birthday wrong, writing down our wedding anniversary/tumor diagnosis day/Flag Day instead. Well, it’s only two days off.

Home, at Last

The return home was a relief for all of us and it has been clear that, while we could have gotten things together to rush back to Memphis and push forward with CSI, we all need this respite. I relish the last moments of the summer routine, where I get to spend three days a week swimming outside, blinded by the rising orb of the orange sun when the days are clear. In the week we were gone, a sunflower that had been mercilessly assaulted by deer had gone from a tight, crumpled bud to opening fully, its petals splayed and floppy. Judicious netting had saved it and it had managed to thrive, despite apparent doom only weeks before. I don’t know if its tenders had a surfeit of optimism and horticultural vision or a dearth of sense, but the gambit payed off in the face that now loomed above their mailbox.

Is there a lesson in this resilient sunflower for me? We have already played this card and netted the naked stalk, I think. The sunflower has bloomed gloriously and we beam in its radiance. Fall comes and the flowers will fade in their own time, a time that is not of our devising but whose trajectory we can control only to small degrees with thoughtful nudges here and there. An aggressive application of fertilizer will not change the movement of the seasons as the leaves above us turn yellow and start to pepper the ground around us.