Sophie’s last MRI on Dec 3rd showed tumor growth. And absolutely no cell death from the radiation (or the ketogenic diet we’ve had her on for the past month). The oncologist said that necrotic tumor tissue has little polka-dotted dark areas where the contrast dye isn’t absorbed and also does not have smooth uniform edges like he saw in her scan. There isn’t any question that she failed the golden standard and aggressive treatment that they were hoping would cure her. At this point, he’s offering a few Phase I clinical trials in various locations (including DC Children’s) or to go home with palliative care and enjoy the time she has left with us. I hate it hate it HATE IT that the last option was even mentioned. I know it’s a good choice for lots of families, but to me it sounds like giving up and it also means wrapping my mind around the possibility that we might actually have to watch her die right in front of us. I just want to wake up from this nightmare. The only way to handle things is the way we have been: don’t dwell on the pain and heartache from this past year of treatment and try not to think too much about the future either. Living in the moment comes very easily when it’s a survival mechanism. It’s served me well so far. I’m enjoying Sophie NOW. Though I certainly still spend time enjoying old videos and photos of our beautifully normal pre-cancer days, I’m not mourning them so much anymore and instead I’m just appreciating and smiling at the happy memories. Most of the time though I’m in the moment: I’m experiencing her soft hair with all my senses, letting my heart dance to her sweet high-pitched voice as she sings ABC and Twinkle Twinkle, committing to memory the weight of her body as I hold her and how it feels to have her arms wrapped around my neck.
We are waiting to get more info back from a place where we sent her tumor tissue for genetic typing. They will tell us which DNA deletions and anomalies they find in the cancerous cells and we hope that new info will guide us more clearly towards something that can still cure her without the horrible side-effects she endured during the high-dose chemo that nearly killed her 4 or 5 times over. And cure is just relative… after the highly toxic treatment Sophie has endured, it’s a given that if the tumor goes away she will still suffer enormous side-effects for the rest of her life. We’ve already lost our original little girl. It feels similar to a break-up… it feels like a mini death of sorts but the person is still there. And when you get over it your relationship different:
But Sophie 2.0 is still our beloved daughter and still capable of great things and we love her just as much as the “old” Sophie if not more because we now know how tenuous life is.
We aren’t particularly surprised at the results from this MRI- it seemed she wasn’t doing as well as hoped from the very beginning of treatment since we never saw significant tumor shrinkage. Our only big treatment success is the large amount of tumor tissue her surgeon was able to remove. Even though her spirit is strong, her body has been weak and prone to illnesses and sensitivities ever since she was born (eczema, food allergies, reflux, reactive airway disease, and suffering through 2 to 3 week long viruses every single month for her first year or so). People sometimes say Sophie is a fighter and is so strong and will pull through. I so wish that were all it took. But she’s a little girl, she’s not a fighter. Her body was weakened by the treatment alone. A brain tumor doesn’t seem to care about how positive and determined you are about beating it. So while we are extremely sad that our fears are becoming more concrete, we pretty much feel the same today as we did the day before the MRI. She’s not in treatment again yet. We are still at home and put up a Christmas tree and are spending time together until whatever’s next. We keep on living in the present.