Day 2- Round 3

Gracie's night was OK. She slept most of the night. The chemotherapy was completed at about 10:30PM last night and so we all were able to lay down at a reasonable hour. I was up with her every couple of hours for her to use the bathroom and sometimes I woke up when a nurse came in to check her vital signs but it was not as bad as it could have been. Gracie has not experienced the severe pain that she did last time so we are really pleased. The swelling in her eye is making it difficult for her to open her eye by herself but the swelling is far less then last round!
Yesterday, in talking to Dr. P (our pediatric ophthalmologist) we found out that Gracie is her first patient on this treatment regime so she is learning about how a patient reacts to the subtenon injections along with us. Dr. P is really good at explaining why they are doing things but I also wanted to speak to our pediatric oncologist, Dr. M, because he is involved on a national team of doctors working on new treatments in retinoblastoma. Dr. M did come and speak with us this morning. It was nice to get his perspective. He basically said the same things as Dr. P had said but emphasized that it was a very good sign that the tumors in the right eye were not growing. He reiterated that the it was difficult to assess at this point if the visceral seeds were going to be effectively destroyed by the treatment but they had seen some calcification on the seeds and that was a good sign (there is just not as much calcification as we had hoped).
Dr. M also explained a little further about how the tumors on the retina of the right eye appeared to be more mature. It is difficult to tell at this point, but they may have stopped growing long ago. If it is true they are benign (not growing anymore), that would explain why the treatment has not caused them to shrink either. Dr. M emphasized that because Gracie has such good vision in both eyes, they are trying to do all they can to preserve the eye. However, if the tumors (particularily the visceral seeds) cannot be controlled and the right eye is removed, then Gracie will still have very good vision from her left eye. The possibility exists that, if the visceral seeds are successfully treated and the tumors on the retina are thought to be completely benign, then Gracie could continue without removing the tumors and be constantly monitored to make sure that the tumors do not start growing again. This course of action carries some risk as one of the tumors is still right adjacent to the optic nerve. If the tumor were to grow onto the nerve then the cancer would have access to Gracie's entire body and be very difficult to treat. Dr. M assured us that there is no risk while she is undergoing chemotherapy and that there are too many unknowns at this point to make any decisions about future treatment, however he was kind enough to answer our questions and explain several potential options.
We continue to receive wonderful care from the healthcare workers and appreciate their efforts. As always we hope and pray for Gracie's full recovery from this round of treatments and that she may keep both of her eyes. Thank you all for your support and concern especially while Gracie is in Houston these few days.