What's Up With Gracie?

It's time to make a post to let you know where Gracie is in her care.  Normally she'd have gone to Houston last week for her EUA as that would be keeping with her 4 week cycle (it should have been April 2). However this month the Retinoblastoma Center of Houston goes live. As such our schedule is getting a little mixed up. Gracie's care is getting transferred from Dr. P a pediatric ophtalmologist at Texas Children's to Dr. G an ocular oncologist from MD Anderson Cancer Center. Her care will still be provided at Texas Children's but now 4 facilities in the Texas Medical Center in Houston will be collaberating resources to make sure our little retinoblastoma kids are receiving the very best care. Dr. P and Dr. G had to coordinate surgery schedules as they want to see all the rb kids together for the transfer of care. This wasn't able to be scheduled until April 20 which is when we'll head to Houston for the next EUA. I was a quite uncomfortable with the wait as this will be 6.5 weeks since her last EUA and there was new growth on the last exam. But I was able to communicate my fears with Dr. P.  She said she was comfortable with the wait, but if I wasn't then she'd try to get Gracie in earlier. We would still have to make the April 20 appointment to see Dr. G for the transfer. Really I just wanted to make sure that she herself was comfortable with this date, and not that it was just a scheduler who put us in that late. There is some degree of trust that has to be put in your physicians as it's their expertise you rely on. We're putting Gracie's life and vision in her hands and those of Dr. G's. We have no other choice, and we're glad that we have access to such wonderful physicians with who we can feel confident in their judgement.  

Stephanie

This is the press release about the Retinoblastoma Center of Houston

http://www.bcm.edu/news/item.cfm?newsID=1371