Ada’s results so far

We got Ada’s results on Friday. Her scans show some areas have had very good response, but there are a few active metastic disease sites left in her eye sockets, liver and pelvic bone.

She started with a Curie score (based on active metastic sites) of 19, and is now down to a 4, which is a lot of progress and we were really happy to hear.

However, historically with scores of over 2 the prognosis is not as positive. But we are remaining hopeful as Ada is on a new trial protocol which should offer better results than previously available, and there are cases where kids have gone through with similar scores and done well.

The best treatment option is still to do the two rounds of bone marrow transplant and then do radiation, now in 5 sites instead of one.

We are honestly scared of what radiation around the eye socket area will mean for her vision and other possible nerve damage, but we are shelving that for later as the next Big Up for us is the transplants. More on that later. So it’s not the worst news, but it’s certainly not what we were aiming for and brings a new wave of challenges.

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