January 22, 2009
I feel like Loki, the Norse God of Mischief, has trained his gaze on the Buengers. While enjoying the break from treatment and waiting to meet eligibility standards for a new clinical trial, Erin has felt well and enjoyed all of her various activities. Unfortunately, she developed a little fluid on her lung over the weekend. For those of you who googled or goodsearched pleural effusion after reading Tuesday's entry, don't panic. Erin does not have pneumonia. She does have some pain and is taking Tylenol more often than an eleven-year old should. Her breath is a little more shallow on the right side, but the amount of accumulated fluid is quite small. We did not have to stay in Houston overnight. She returned to school Wednesday morning (a tad late, since I let her sleep in after our thirteen hour jaunt to Houston and back). She made piano lessons after school and her fused-glass jewelry workshop last night.
Where does that trickster Loki come in? The CT scan showed tumor growth (I'm surprise at how much, but not that she had progression, which I consider pretty much a no-brainer, in the absence of treatment). In fact, tumor activity probably caused the fluid to back up into the lower lobe of her lung. We needed evidence of tumor growth to qualify for a trial. . .HOWEVER. . .having a pleural effusion really limits what drugs you can give. It keeps her from qualifying for any of the trials we were waiting for. It also eliminates a lot of the drugs we can do off-study, because of the danger of administering the required extra fluids. We are starting oral etoposide (which is a once-a-day, at-home gelcap) today.
What did the Buengers do in the face of this cruel joke? Enrolled Erin in six sessions of Fencing for Kids, starting week after next! Just a warning to the beast neuroblastoma, Erin will soon be armed and dangerous.
Erin has agitated us about taking fencing for a number of months. It's part of her personal plan: get a little more active, a little stronger, a little more endurance. That, she hopes, will pave the way to getting back to more athletic pursuits.