Mia's Imaging Results

After a couple of days, and countless phone calls, I finally got the results of Mia's Catscan and renal ultrasound.

From what her pediatrician can tell, her brain images have not changed much, if at all. This of course is a temporary sense of relief for me, as the results will also be forwarded to her neurologist who will also have a look at them. In her almost six years though, nothing with her brain images has changed, so I am hoping for more of the same this time around!

Her renal ultrasound though, did show an increase in tumors. :( The tumor type is called an angiomyolipoma (AML), and they can continue to grow in size and numbers inside of the kidneys. Usually they grow slowly, and with constant monitoring problems can be detected early. Her doctor says that at this point it looks like her kidneys are handling this increase well, but it still causes me a degree of worry.

If the tumors grow to many or too large, they can cause some serious pain and problems that could result in surgery, transplant, or dialysis. And, because of the combination of TSC and the AML's, there is a greater risk that these tumors can turn malignant. This is rare, but it is still a risk that crosses my mind.

I do have some new hope though. Earlier this year the FDA approved a drug called Afinitor to treat AML's. They found that Afinitor can reduce the size of AML's, and it was previously approved to be used as a treatment for a type of brain tumor caused by TSC called subependymal giant cell astrocytomas (SEGA's), which it also reduced in size. If these AML's can be reduced now, and potentially prohibited from growing further, it would give Mia a really good chance of not having so much of a complication later on.

We will be meeting with a Nephrologist next month, and they will be following her kidney function from here on out. I suspect that they'll request more imaging throughout the year to be able to keep a close eye. When we go, I will be asking about the use of Afinitor for the AML's.

Though I am wary of the overall outcome, I am choosing to focus mainly on the positives that can come out of this. After all, positive thoughts and vibes bring positive results. And Mia needs her mom to be strong enough to handle anything, and thinking about the negatives can only wear a person down.