It's not nothing.
Two months ago, Scarlett's routine MRI showed a mystery spot. There was some hope it was a blood vessel. Turns out it isn't.
Today we met with her neuro-oncologist. The new MRI shows that the mystery spot has grown. It is about the size of - which food is good for this?? - pumpkin seed, maybe? A few grains of rice in September, a few more grains of rice now. It is only visible on 2 of the many slices of MRI images. In essence, tiny, growing slowly, but definitely growing.
There is some bad, some good, and a lot unknown.
The bad is that after over 18 months of being tumor free, Scarlett once again has an active brain tumor. It is crushing to write this, devastating to hear, and horrifying to think about. It feels like everything we did - 12 months of chemo, losing her feeding skills, tubes, shots, extra surgeries - was a waste. It may be what has staved this off so long, but it still feels like we tortured her, and left life-long deficits, for something that didn't work. As far as I know, Scarlett is the only one of the kids with this same brain tumor in our little group (about 7 of us) that has had a recurrence. Recurrent brain tumors are typically more challenging to treat because the first round of treatment obviously did not work; we have to attack it in a different way. However, every case is different, especially when the tumor is as rare as this, so we proceed with only Scarlett in mind.
As difficult as this may seem, there is some good. We are currently at the "best case scenario" stage: the growth (whatever it is - more on that below) is so small, it may not even be able to removed yet. It is small enough to be treated as is by CyberKnife radiation, which would have few, if any, side effects, and is likely to stop the growth in that area. We are still learning about the different types of radiation, but her doctor feels like the CyberKnife option is the least invasive, most effective and easiest on a toddler (she thinks it would be just one session on one day.)
The composition of this mystery spot is unknown. It is at the base of the old tumor - the part that was most vascular, the hardest to remove, and where the tumor likely originated when she was developing in utero. It is growing very slowly, which hints at it being something other than glioblastoma multiforme, which is a severely aggressive tumor that almost never grows slowly. It's possible it is a later maturation of the same tumor - some new iteration of the few cells that may have been left behind in the first surgeries, that has survived all the chemo, and that has developed a mind - and growth pattern - of its own. We won't know the exact make up until (or unless) it is surgically removed and biopsied, which may be a while, since it is so small.
Tomorrow, we take a disc of the MRI images to her neurosurgeon in Oakland. He will decide what he thinks can/should happen from a surgical point of view, and then discuss with neuro-oncology in Palo Alto. On Monday, the hospital holds their weekly Tumor Board, where the team of doctors and specialists confer about all the active cases and decide a plan of action. We should hear their plan Monday afternoon. The plan may be to wait for it to grow a bit more - not my favorite option.
Until then, we just forge ahead. We are still keeping our holiday travel plans, still working full time, and still planning to keep her on her schedule of school and therapy as much as we can. I am surprisingly composed. I guess I am not really surprised - it just seemed time for some kind of interruption in our life. I have been out of my mind the last few days, distracted and easily upset. We have been short with each other, and just felt the cold wind of disaster coming our way. I had what seemed like hundreds of scenarios playing in my head - why they hadn't called, why they would call, what they would say when we got there, what every little clue or gesture really meant. In the end, our appointment was calm and reassuring. As always, I have my full trust in her team of doctors; they are 100% on our team. As much as we all wished she would continue to be tumor free, we knew all along that this was a possibility - these tumors do not go away without a fight.
The brightest spot is that they are BLOWN AWAY by her recent development. Her doctor was taking her own videos of Scarlett crawling just so she could share it with everyone else. If you didn't know to look, you would never guess how much this little girl has survived. This tumor picked the WRONG kid to mess with.