Here We Go

So Tessa had her biopsy on Friday, and she did a great job as usual. The doctors couldn't get any bone marrow out of her again because of the denseness of her bones, so we had to wait until today to get any information about what they found. We went in today for more labs and to meet with the doctor.

Over the weekend we weaned Tessa off of the steroids to see what would happen with her white blood cell levels. Her labs today showed that they went from 81,400 (an insanely high number) down to the 50,000s. Still really, really high but evidence enough that it was the steroids that were driving her numbers up. So she in now going to be taking half of what she was taking before in order to keep her numbers from going up too high, but also trying to keep the pain from returning.

The steroids have done several things at this point. They have taken away her bone pain, which is a huge relief. They have also brought her white cells out of places where they were hiding before. What this means is that when they look at her blood now they are seeing things that they couldn't before. It isn't a pretty picture.

What they are seeing (but not confirming or able to diagnose yet) is that there are this is probably primarily a bone marrow disease. There were 3 possibilities that Krysta (our doc) threw out. Myeloproliferative neoplasm, myelodysplastic syndrome, or JMML (Juvenile myelomonocytic leukemia). They are all extremely rare, and they all have very bad outcomes. The plan, if she is diagnosed with any of these, is that she would undergo chemo and radiation and then receive a bone marrow transplant. Even if she gets all this her survival rate would still be very low.

As you can imagine Casey and I are reeling. At this point we do not have a diagnosis, so nothing is set in stone. But it doesn't look good. We have some serious doctor appointments coming up. We will probably be staying in Los Altos for the forseeable future.  Keep us in your thoughts and prayers.