Decompression

April wrapup... Raina is no longer a good candidate for surgery and so we have opted for radiation. In the weeks leading up to radiation treatment the oncology team wanted to get after the tumor with a third round of chemo. Fast forward a week or two and the third round is now complete... being more or less uneventful, we were discharged today. Another MRI to assess the progress is imminent.

We are working hard on getting Raina enough nutrition to maintain weight and then some. She could probably stand to put on a few pounds... a challenge with her being sick often, but the fact that we are home for awhile and dodging chemo for two months will give her a chance to get an appetite and recoup her strength.

Raina's condition permitting, we'd like to decompress this month after what seems like an eternity of high-stress decisions and inpatient care at the hospital. I for one anticipate drinking at least one beer and taking as many walks as my bony frame can tolerate during the month of May.

42

All Sci-Fi nerds know that the number 42 is the answer to the ultimate question of life, the universe and everything. Funny that it would also be the answer to the question that's been occupying our life, universe and everything for the better part of two months. The much anticipated visit from the oncology team came in the early afternoon following Raina's MRI.  They reported that the tumor was 42% smaller when compared to the pre-chemotherapy imagery. This is spectacular news.  I would consider it the first real victory in a string of battles on the path to a cure. Hopefully we've beaten up the tumor enough to make total surgical resection a possibility now.  A consult with neurosurgery is scheduled in the morning to assess the potential.

For the first time it seems like that light at the end of the tunnel might be something other than a speeding locomotive. We will revel in the new hope... and be grateful that the next phase of this fight will likely be on our terms, not the tumor's.

Walking the Walk

We caught a break two weeks ago when testing of Raina's spinal fluid revealed that the first round of chemotherapy cleared the tumor cells that were previously present. This would seem to bode well for the results of the elusive MRI that is now scheduled for Tuesday afternoon. However I'm sure anything is possible at this point. We entered the hospital for the first round of chemotherapy expecting a 10 day stay and didn't walk out until 6 weeks later.

Now back in the hospital after a few days at home, with that MRI looming and two rounds of chemotherapy behind us, we are starting to fray a little at the edges. The past four days have felt like four weeks as we try to prepare for and at the same time distract ourselves from what is waiting on the other side of Tuesday.

...

In the 14 months since Raina was born, she has grown from a squirming, cooing creature to a little person ... a gentle old soul that waves at strangers and gives out hugs and kisses with reckless abandon. Somewhere along the way she also became our best friend.

Courtney and I have previously agreed on what we are, and are not, willing to do to beat this tumor. I wonder now, when it comes down to it, whether we'll be able to make the important decisions in the face of the overwhelming emotion that is creeping up.