A few weeks ago, I heard the first doleful honks of Canada geese overhead, a broken vee portending the migration towards more temperate weather. This spurred me to mourn my loss of the change of seasons and a move into the crisp air of fall that is so invigorating, brightened by the cascade of brilliant leaves. Color has barely begun to kiss the tall, verdant maples in the neighborhood, a transition we would lose with our decision to migrate, like those geese, southward to Memphis.
I have been mired somewhat in these musings, with the indefatigable passage of time drawing us closer to the realization of our decision and the plans to start craniospinal irradiation (CSI) on Colin. It has been hard to look at him, completely oblivious to the consequences of this tortured decision, going about the business of being an eight-year-old. The sand slips through our fingers, and with him each grain feels like a lost opportunity.
With our decision, we encountered another challenge related to the continuation of the indoximod therapy, which is still an option under the single patient IND. Though he failed this therapy and standard oncological practice would dictate abandoning it for good, these rules don’t apply as evenly for immunotherapy, and there is still a viable rationale for continuing that treatment. The added immunotherapy may attenuate the duration of the remission we win from CSI (in the laboratory, radiation is the most potent modality for synergy), and we had finally settled into a dose and regimen that were manageable with good quality of life for Colin. Furthermore, we can always suspend treatment for a cycle if warranted, such as to go on a trip with Make-a-Wish.
Dr. Merchant didn’t have a problem with us continuing the therapy after CSI, but we later discovered that enrollment on another study would present a problem for the single patient IND and the drug company’s ability to provide Colin with the indoximod. Over the past two weeks, this issue has been evolving and finally declared itself today.
Shifting Winds
The upshot is that, if we want to continue the indoximod, Colin cannot get CSI at St. Jude. In the face of this contingency, and wanting to maintain the best array of options available for Colin, we have decided to cancel our plans for treatment at St. Jude and pursue another line of therapy for radiation. We are currently in the process of working with Mass General for Colin to get proton radiation in Boston for CSI, which would also potentially allow greater sparing of sensitive structures, including the corneas, thyroid, and cochlea.
All of the decisions around this issue are complicated and are not plainly sequential. We certainly knew that proton therapy existed, but the theoretical benefits of going that direction didn’t outweigh the benefits of staying at a known and proven institution in the care of a team that we knew well and amid an existing matrix of social support. The move has nothing to do with our faith in the team but has everything to do with our desire to provide Colin with the best quality of life and greatest choices possible as we move forward.
The uncertainty surrounding this issue is a cloud that has cast a pall on me over the past several weeks, becoming thicker and darker as time has worn on. Our resolution to shift gears has taken a tremendous weight off my shoulders, even if it also brings with it a cascade of activity and logistics. It is worth it, since I have been so concerned about this that I had not even begun packing for the trip.
Fortunately, I am like Caesar and notoriously unsuperstitious, so this change in plans doesn’t throw off my world view. The geese were wrong, as it turned out. We are not to accompany them down south but to take their place in Boston. Perhaps I misread the sign, or perhaps it is simply that life doesn’t conform well to plans. The unquoted half of the poem Steinbeck refers to in “Of Mice and Men” includes the lines (spelled out for readability), “And leaves us nought but grief and pain for promised joy!”
For whatever it’s worth, I have little emotional attachment to plans and am happy to cast them aside when a sweeter suitor strolls on by. The other way, if one is to take Burns’ work to heart, brings more heartache than comfort. Inviting chaos, rather than struggling to ward it off, can open doors and enable us to see opportunity in the swirling mass.
I will take this opportunity to advertise fundraising through the Alex’s Lemonade Stand Foundation for Dr. Johnson’s lab in Augusta. I cannot emphasize enough how badly these children need better treatment options, and the basic science behind the treatments, especially when backed by a translational program, is crucial to effect change. Also, if you donate by 2 pm on Friday, the 25th, your donation will be doubled. Add to this the fact that Alex’s will match all donations because we have exceeded the $2,500 required for a match, and your donation will go that much farther! I have a page set up for donations here: http://www.alexslemonade.org/mypage/1164184/member/259265
After many years of only being able to send best wishes from afar, it will be an honor to be able to provide some material support for your family when you are here in Boston. Just let us know when your timing firms up.
As always, I am confident your decisions are the best for Colin; he is in good hands. I have hesitated to call because I know your time is precious, but I am always glad for a short chat or a long powwow. Until then, my love to all of you.
You’ve had to come up against hard and painful choices and my heart is with all of you there. I love you all. If I can help in some way, I’m there.
Thinking of you all! Hugs and prayers!