A few details about Lucy’s actual radiation:
The last couple of weeks have been a challenge because her time slot moved to later and later in the day, which meant more of her NPO time was awake, until Friday she was the last child, and her appointment was at noon! On this schedule she sleeps most of the afternoon, stays up late, and isn’t hungry until the middle of the night. But next week she is back to the first slot; she’ll be much happier getting it over with, and she’ll resume more normal eating and sleeping patterns. I thought at first that the difficult part was not eating for 6 hours before and not drinking for 3 hours before (and trying to time her DI medicine so she wouldn’t be too thirsty when she was not allowed to drink), but I realized that the emotional weight of the impending challenge made up the larger part of the difficulty for her. So we are grateful for the next week of early appointments!
Also, the anesthesia team agreed to come in on the Sunday before Thanksgiving to make up for the Veteran’s Day Holiday, insuring (barring technical difficulties) that we’ll be completely done in time for an especially meaningful holiday!
Dr. Marcus, the radiation oncologist overseeing her, says that everything is going well, and that recent evidence on the efficacy of proton therapy in craniopharyngiomas (her tumor) has him considering even shaving a day off her treatment plan. This would spare more exposure to the optic chiasm, damage to which is her main risk, which would probably appear as loss of peripheral vision down the line somewhere. And any less radiation also means less risk of secondary malignancy, when healthy tissue exposed to radiation warps into more, unrelated cancer years later. The most recent numbers on this indicate that 20% of pediatric patients treated with traditional radiation experienced this– a concerning number. The significant reduction in exposure to healthy brain cells with proton radiation, however, corresponds to a reduced risk for secondary malignancy as well as other late effects, for which they are still gathering the numbers. In addition, the placement of the 3 beams used to target her particular tumor leaves basically no risk for cognitive loss. I’ll end that technical paragraph by saying YAY!
Another important explanation about the tumor itself: because it is officially benign (only locally invasive and unable to become metastatic), and because radiation continues to have effects for months afterward, when we have the MRI in January the tumor will still be close to its original size. Radiation only kills cells programmed to divide, and many of her tumor’s cells do not have that capability. So as necessary as the radiation was to save her sight and eventually her life, there will be no beautiful blank space on post-therapy scan. Her tumor will likely continue to shrink over time and the odds are excellent that it’s been de-activated from causing trouble again.
All of her caregivers smile when they come in to look at her, from their perspective a straightforward and happy case.