New Plan

Killian made a strong case today for immediate treatment targeting the tumor on his forehead and remaining tumor tissue on his jaw. Both docs (Beth Israel and Columbia Pres.) agreed to more radiation. We’ll probably go in next week to get the new radiation mask made, with treatments maybe starting the end of next week or the week after. Dr. G., his primary oncologist, put him on a clinical trial list for an IGF-IR inhibitor that they expect to do a phase II study of in the near future. The hope is that they can coordinate the radiation course with this trial – that’s a slippery fish though. I put a query out to the Sarcoma Alliance Discussion Board, asking about first-hand experience with IGF inhibitor side effects. That's what Killian cares about. We find the descriptions are better than what the trial folks offer because they list any and all possible effects – covering all known scenarios (and covering their butts). Whereas, other sarcoma patients tell you about things that really bother them.

I had looked into this class of inhibitors before Killian did the VEG-F inhibitor. The IGF inhibitor sounded more promising at that time, at least for Ewings Sarcoma patients. I’ve heard, since then, from Synovial Sarcoma patients who tried similar IGF inhibitors and had no success. So, if this drug can’t be coordinated, looking to off-label inhibitors or other alternatives might be just as well. Also, Killian is wary of trial demands as they pertain to his med regimen. For the purpose of clinical trials, he’d have to stop taking the drugs and/or the supplements that he feels might have contributed to recent coups against his tumors.

I feel whiplash, researching treatments again. Killian has new resolve to fight. Of course he does: he’s feeling SO much better as a result of all that horrible growth in his mouth being gone. So, Phil and I are concentrating on keeping flexible. Fighting when and how he wants to fight. What’s changed? What’s the sudden stop? Well, there isn’t the same drive to return to hours and hours of research and advocacy at the expense of making music and laughing with Killian and Cally. We have a different sense of presence, a different sense of “now” than we had five months ago.

I’m not looking forward to going back to McDonald house either. Don’t get me wrong, it’s a very nice facility, run and inhabited by very interesting and nice people. But, there is sheer joy and life when the Mansfields are together. Plus, there aren’t any advanced care patients at McDonald House—at least that I’ve ever encountered. As a parent, at this moment in time, I’m in a different place than the shell-shocked, the fatigued, the battle-injured, the frustrated and the frightened. I don’t want to be part of that support network right now. I need to live it up, get ukulele lessons from Killian, see art. Now is not the time to process. At least the Hole in the Wall Gang folks will be there to play.