I had been waiting to write a blog update for a few days as we waited for MRI results. Unfortunately, we did not get the best news, so I just have to get it out.
There is a spot on Scarlett's MRI. They don't know what it is. It is most likely a blood vessel that looks a little strange; as the NP scrolled through the slides from the MRI, there was evidence of a blood vessel leading right up to the spot, so it could just be part of that vessel. Lucile Packard Children's Hospital (Stanford's children's hospital, where Scarlett has had all her oncology treatment) brain tumor board has reveiwed it, and the gut feeling is that it's a blood vessel.
But maybe it's not.
It could be the start of a tumor. It's too small to do much about at this stage. Scarlett's neurosurgeon at the other hospital is being told (the NP wanted to warn him in case he read it here first...) We will wait 6-8 weeks and get a new scan, which will hopefully help give a concrete answer. If it is a vessel, it will be the same or invisible. If it is a tumor, it will be pretty unmistakeable by that point. Until then, we just have to wait.
Because she knows us very well, Scarlett's NP knew we needed to know what the plan would be if it is a new growth. At this point, a new or recurrent tumor in the location we saw today would be operable if it were larger. Once it was removed and biopsied, because Scarlett had such intense chemo already, the next step would be focal cyberknife radiation.
It is so much to take in, and even harder because we don't really know if there is anything to worry about. My heart dropped and my eyes filled with tears as soon as I heard the NP's voice change to the "something to tell you" voice. I know enough about the common progression of these tumors to know that any hint of a recurrence is bad news. Very few children survive the first tumor, and even fewer make it through a second.
I'm not sure how to go 8 weeks patiently. We are busy enough to bury ourselves in work, school, therapy and blood drive prep (Oct. 20!!) but there is no way to erase this from my mind. I deelpy hope this is another bump in our road that will pass uneventfully.
It's been a rocky few weeks in general. We have had to make some big decisions that are exhausting to deal with. First, we had to leave her current audiologist. We have dealt with months of problems, capped off by a very upsetting cancellation of a sedated test after we were not told the time had changed. We will move her services to the other hospital, which is closer to her school.
We are also struggling with what to do about our health insurance. We have had insurance through Chris' job at Starbucks for the last year, in addition to Scarlett's state-provided coverage. It is decent coverage, reasonable premiums and only requires 21 hours per week of work. It would seem like he could stay there, but we are really struggling with the time. His week is back-to-back school and appointments, followed by three days of mind-numbing, on-your-feet work. He needs, and deserves, a break. We had hoped that my new job would have reasonable benefits to allow Chris to quit so he could take on Scarlett's care as the full time job it is. Sadly, my district offers only painfully high-cost health coverage - over $2000 per month to keep Scarlett's doctors. We have investigated all the alternatives we can think of; we were denied for independent coverage due to Scarlett's preexisting conditions; we may have options through our university alumni association eventually, but they said we would need to exhaust Chris' COBRA benefits first in order to qualify with her history. I am not sure how we will proceed yet, but I hate seeing him exhausted week after week with no time off. Since we have been through so much over the last two years, we really value the time we have together as a family, even if it is just to be home together, and a change in Scarlett's scans makes that even more critical.
There is a lot to consider in the coming weeks. On the plus side, Scarlett is making amazing progress at school, which I will share more about in the next few days. Seeing that helps to drive our efforts, and reinforces our confidence that this crazy schedule is worth it.
We are focusing on getting Scarlett's birthday party/blood drive ready. We are still looking for raffle items, which will be used to help raise money for the Pediatric Brain Tumor Foundation. If you have something you would like to contribute, please let me know at scarlettgrace2010[at]gmail[dot]com.