October 27, 2008
The BMA (bone marrow aspiration) Gang left about an hour ago for the drive into Houston. At Texas Children's this procedure is done on a first come, first served basis: early arrivers get in line to do labs, then (after another wait) have an office visit. Once cleared, they race to another floor and get in line again to do another physical and health history questionnaire at the PACU (pediatric ambulatory care unit). When done, they join the queue for the actual procedure (if I remember correctly the BMA team starts cranking up their hip drills around 10:00 or 10:30). There's really no need to leave the house at 5:30 and race through the various steps, EXCEPT Erin can't have anything to eat or drink until she's done. This puts a premium on not swanning in at 9:45 only to find oneself at the end of a long line, where there is no chance of service until close to tea time.
In the absolute best case scenario, they finish with the one-hour, post-procedure observation about noon, stop for lunch, and arrive at the backdoor by 3:00. I don't, in my wildest imagination, expect that to happen. Five o'clock sounds more likely.
Tomorrow morning, Erin and I will have a "do over," retracing the steps back to Houston at an unGodly hour and then spend the better part of a beautiful day waiting for something to happen. When I talked to the nurse manager, Pam Holt, last week about how long to plan on being in clinic for Erin's ten minute infusion of pemetrexed tomorrow, she said, "Probably at least six hours. Plan on the whole day." As it wasn't the first of April, I assumed it wasn't an April Fools prank, but just in case I asked. She told me she wasn't kidding and that if it was any shorter than she predicted I would be pleasantly surprised.
Unlike a lot of children with neuroblastoma, Erin hasn't needed to take part in a lot of experimental therapy trials. We have consistently signed up for informational trials that help move research on at a basic level, but except for the vaccine study Erin did after she was NED following her original treatment and her brief flirtation (one month then kicked off for progression) with lenalidomide in May of 2005, Erin' has controlled her disease all of these years with already available drugs. At the end of the summer that happy situation screeched to a halt.
From now into the foreseeable future, hope for Erin comes from the pipeline of drugs and treatments that are unavailable save through the clinical trial process. We wish that the pipeline gushed options, but it doesn't. At this juncture we had two choices. Two is better than none, but we can do better. That means more research, and thus more dollars for research.
Research can save Erin's life.
That's why we continue to work with CureSearch to increase government funding and with CNCF (Children's Neuroblastoma Cancer Foundation) and Lunch for Life to increase private funding for pediatric cancer research. That's why we hope our friends will do the same.
For you local Erin fans, here's the first step. I am going to help Tracy Ash and our friends from south Texas CNCF hold a Garage Sale to benefit Lunch for Life on Saturday, November 8. Believe me, what I don't know about garage sales will fit in Kyle Field with extra left over to fill Reed Arena. That said, I'm committed, and I hope you are, too. If you have items that you would like to donate, PLEASE DO. You can bring them to my house by November 5 or call, and we'll figure something out. And, as I said I know nothing about giving garage sales or shopping them, so it would help a great deal if you would price the items before you pass them over to me.