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Wednesday, July 9, 2008

July 9th Update

It's scan week and we're in scan mode. Our apologies for the lack of communication. The writing mojo was shaken with the death of so many children. It makes you want to hunker down even more and just live for every moment you have with even more conviction. Lately we've heard a lot of, "he's doing so well that everything must be OK" or "aren't you glad your battle is over?" And, from the outside Liam does look perfectly "normal." In his adorable class picture, you can't tell Liam apart from his rosy-cheeked classmates. He fits right in. Unfortunately looking healthy on the outside is not a sure sign that everything is OK on the inside. It's a sneaky cancer. It likes to make return visits. It's the reason Liam's little body is scoured every 90 days looking for any signs. And that 90 day regimen will not end for another year at which point the testing is pushed to every 120 days for another three years. It won't be until June 2012 that we have been told we can pop a champagne cork. Until then we're just trying to live as best we can one day at a time, one memory at a time, one experience at a time and walk the double tightrope between two parallel but completely different worlds. It truly is crazy, awful, unacceptable, and terrifying. It makes no sense that at this point we know of more children who haven't made it than who are doing well. We continue to be consumed with raising money for research and there are some amazing developments that are imminent as a result of the efforts we've been involved with. Together we truly can make a difference but, in my opinion, we can't make it fast enough.

Today Liam's port will be accessed for the next three days in what will be a leg kicking, screaming fit. "No - Mommy - No - I DON'T WANT THE NEEDLE! NOOOO!!! NOOO!!!" Following the accessing is his CT scan and MIBG injection in nuclear medicine. Tomorrow is the knee-weakening 2-hour MIBG scan. Friday is the painful bone marrow extraction from four sites in his pelvis and a four-hour urine collection. Three weeks ago the stomach ache of anticipation started. Today Liam has his first speech therapy session to work on the language he developed while sucking on a pacifier during treatment. We have utmost confidence, of course, but I'd be lying if I said this week isn't completely unnerving.