Good News from Boston!!! – January 15, 2014


We are so thankful and happy to report that Emma’s scans were stable today. Both the brain tumor and the two spots in her spine had not grown and they consider to be stable. While of course we would have liked the MRI to show that the tumor had shrunk we are so very thankful that it has remained stable. We are very relieved tonight and are taking a few minutes to just exhale. 

It was an extremely busy day of hurrying and then waiting at different appointments. The doctors all agreed that they were pleased the tumor had not grown, but most of all they were very happy with that she continues to make progress towards meeting her milestones. They were very pleased with the progress that she has made in PT, OT and Speech. We talked for quite a while with Dr. Chi, the oncologist, about the protein in Emma’s urine that continues to keep showing up. Evidently all labs do things and report things a little differently so she couldn’t be completely sure in her answers based on the reports we brought. Her best guess would be that the protein is just beginning to come up due to the Avastin and that we will probably continue to see it happen. At this time she feels that it is not high enough to need to stop treatments and that we probably have some time before that will happen. She said that it looked like her blood pressure has been stable and that is good. She also said that we would need to do a 24 hour urine analysis to get a true number for the protein in her urine before determining if we needed to stop because the protein in your urine can vary depending on the sample and sample size. Dr. Chi’s recommendation was to continue with this protocol and with all of her therapy. We also talked at length with the doctors about doing a botox treatment on her eyes to help the left eye move better with the right eye. Dr. Legge, the neuro-opthamologist in Omaha is considering doing it, and after talking with the doctors here we have some mixed opinions on when the best time to do it is, so we will see what he things after seeing the new MRI report. After meeting with several of the other doctor’s on the team, and answering several hundred questions we were relieved to leave the hospital with a good report. 

As always it I had mixed feelings as we spent the day at the hospital today. Every time we walk in I get a pit in my stomach from when we were here for surgery. I don’t know if that will ever go away. However, it is also so very reassuring to see her team here and know that we are so lucky to have such talented doctors working with our daughter. I kept thinking about my baby a year ago, and of the incredibly long day we spent in the waiting room. However, today was a better day . Oh what a difference a year makes! Today we could see just how far she has come in a year and how truly strong she is. Today we could see the smiles that weren’t there a year ago and hear her say our names. Even though it is has been a hard and crazy year, Miss Emma continues to fight with a smile on her face and do well. 

We feel so incredibly blessed tonight to have received stable scan results today. We are also so very thankful to everyone for their prayers and messages of support today. It is through your prayers and support that Emma continues to make progress. Thank you so very much!!! Emma Strong!!!