July 18, 2008
We had no sooner returned from Pittsburgh, ate, and slept before we had to hie ourselves to Houston for an office visit and labs in preparation for starting round 4 of irinotecan and temador. Erin was decidedly snippy at clinic (not being her first choice as an apres-vacances spot), but everything went smoothly enough (minimal delays since Dr. Russell had to catch a flight to Chicago for the Neuroblastoma Conference for a big panel discussion on relapsed NB).
HGB 12.1 (normal)
WBC 2870 (low)
ANC 1410 (almost low normal)
PLT 281,000 (normal)
BUN 20 (5-25)
Creatinine .7 (.2-1.2)
These are slightly better than the labs before we began round 3, so we were all satisfied. I quizzed Dr. Russell about the scan results from three weeks ago and looked carefully at them on the monitor. While the tumor area remains larger than it was in January (where you can't really see anything on the CT unless you know what you are looking for), it is at least 80 percent smaller than it was in May. I did not get a definitive answer to the question about whether Erin was MIBG avid again. The radiologist made the call that she was, but Dr. Russell and I think that the bright spot referred to in the report is more likely just an intestinal loop (which naturally takes up spotty bits of the tracer) in the general area of the tumor that shows on the CT scan. Any way, she is either MIBG avid, with no other spots anywhere in her body, or she's still not avid. The bottom line is that this particular scan doesn't add new information, so for the time being we are going to go back to the bone scan, rather than risk the higher radiation exposure of the MIBG, the nastiness of the lugol drops to protect the thyroid, and the inconvenience of a two day scan.
The other topic we spent some time with was Erin's overall reaction to this treatment plan. We have no complaints on digestive issues (the biggest concern going in), but Erin does express irritation with getting tired. This feeling peaks in the second week of treatment (irinotecan only) and is accompanied by some appetite loss. Frankly, I can't tell how seriously to take her on this topic. She says she wants to sleep in longer in the morning, and I know when there's nothing going on she sloths around. Parents of healthy eleven year olds, does this sound familiar? We're going to continue to monitor the situation. I'm uncomfortable with staying on a treatment over a long period of time that makes her feel "not herself" two weeks out of three, but the excellent response she had after two rounds gives me some reason to remain patient for now. Scans come up again in the first week of school (August 28). The other thing that we're keeping a close eye on is Erin's intermittent mention of back pain. This first came about five days after the June scans. Such rapid progression is not unheard of in the NB world, but had her tumor grown enough in five days to cause her back to hurt, another fifteen days at the same rate would put her in excruciating pain, which she doesn't have. In fact, even though she has had back pain, she has refused tylenol every time when offered. And the pain didn't keep her from walking multiple miles every day in Pittsburgh and didn't seem any worse having lurched and catapulted around on all of the most dangerous rides at Kennywood. The whole back thing leaves Walter and I puzzled. Perhaps the physical therapist will have something to add at her visit this afternoon.
Pittsburgh was great (no joke), and whether you like it or not, you will have Pittsburgh lessons over the next week or so. Here is the first:
This is not a tribute to robber barons of the nineteenth century, but rather the Cathedral of Learning at the University of Pittsburgh. “They shall find wisdom here and faith—in steel and stone, in character and thought—they shall find beauty, adventure, and moments of high victory.” Students attend classes in this building and lucky professors have their offices there.
You can also find old intermingled with new:
Robotic sheep to mow your grass:
Whimsical public art:
And the merely amazing (the columns of the Mellon Institute are the largest in the world in single pieces, as opposed to stacked sections):
I'll stop for now with a promise of more Pittsburgh later. Erin and I have laundry to do so we can re-pack and head to San Antonio tomorrow for a 3 v 3 soccer tournament. That's right. I ditched my plans to go to the neuroblastoma conference in Chicago so that I could sweat. I made that choice happily, because there are probably a finite number of soccer games in her future (I'm crossing my fingers for a finite number like 763 or 1215 and not eleven).