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Uncharted Territory
Take a million kids. Maybe 100 of them develop childhood cancer. Out of those, say 10 will get Wilm's tumor. Perhaps two of those will have a form of the disease that doesn't respond completely to standard treatment. Elle is beyond that point today.
The official pathology results were delivered to us earlier today and as many of you have already heard, viable tumor was found in the two nodules that were extracted from her lung. These cells appeared to be completely unaffected by the chemotherapy treatment that Elle has received to date.
It seems that the portion of Elle's disease that remains is a rather rare form - so rare that her doctors are having trouble finding other cases to compare her to. As one doctor put it, one could spend an entire career as a Wilm's tumor specialist and only encounter one or two similar cases.
This lack of case history means that while there are several treatment options available to her at this point, there is no guarantee that any will work - not that the doctors don't think they have a chance of being effective, it's just that with so few like cases, there is no established protocol for eliminating this form of the disease.
That is the bad news. The good news comes from it, and that is that the cells that remain of Elle's original tumor probably have not responded to conventional chemotherapy because they are so slow growing. The standard treatment works on cells that are dividing or preparing to divide, states that normal cells spend relatively little of their lifetime in. The thought is that the remaining cancerous cells aren't dividing rapidly, and so aren't that vulnerable either.
Elle will have a CT scan tomorrow to ascertain what growth of the tumors, if any, has occurred in the ten weeks she's been off treatment. The results will help us determine what course to follow next. If the scan shows no change in the size of the lesions, we will have the luxury of more time to decide what to do. This will likely involve some sort of clinical trial of an experimental drug. If it looks like the tumors have grown or spread, we might put her on a newly developed protocol of standard chemotherapy agents.
We hope to hear on Thursday that Elle's disease is stable. This is entirely possible, and in fact one of the options the doctors were seriously considering was to simply sit back and monitor her condition. Apparently, in the few similar cases that are known, the disease can remain in a quiescent state for years. However, since the experimental treatments that Elle could receive have relatively few side effects, we will probably go forward with a trial in any case.
I will wrap this update up with the medical "so" that has become all to familiar to us over the past few months - so, we do not have a course of action at this time, nor do we even have a medically-based prognosis for Elle. There is just not enough known about children in her situation. We are truly in uncharted territory and will rely our faith and the grace of God to help us make the right decisions about Elle's future treatment. Please continue to keep Elle in your prayers.
Thank you.
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