Today went pretty well, it went better than what I had thought it would go for many reasons. The traffic was not bad (nothing like New York), Brianna did great for the day. I know I was nervous that something would come back differently than what we already knew, but it didn't. The one thing that did come back differently is that Dr. Bagatell and Dr. Shimayda both agreed it was Neuroblastoma differential instead of what VCU Health System called it as Ganglioneuroblastoma. However when showing us on a graph where she sat, it really wasn't any different. It didn't change anything such as being "Favorable" and "Negative" for the n-myc.
Doug and I both feel comfortable that all in all Emily is undergoing what she needs to be undergoing. Basically saying, Chemo is chemo is chemo. So since she is on the National COG Protocol it is the same chemo she would be on anywhere. Basically what it would come down to is where we would get her surgery down after the 5th round of chemo. We didn't meet with the surgeon today however Dr. Bagatell indicated it would be best to do that when we get the scan done. She said we should do it after the 4th round and have it sent to both New York and CHOP to have the CT Scan looked it and see who feels most comfortable removing it.
What we did learn today that was great news is that although Emily's main tumor bed didn't shrink much with the first two rounds of chemo, she indicated it probably means that most of it is dead cells which chemo would not kill off. She indicated after the 6th round of chemo there would be another re-evaluation before the stem cell too see where Emily was and that would really indicate where she sits. Dr. Bagatell also looked at Emily's MIBG scans with another doctor, Dr. Grupp and neither felt that there was of anything to worry about with the place that VCU indicated that they saw on the base of the skull, because they couldn't really see anything. She also explained to us about the bone marrow how the first bone marrow aspiration was positive and then this was negative and she said please don't be surprised if the next one shows them again. She said it is not abnormal to see that since they are pulling from 2 places (2-point bone marrow aspirates).
Overall, our experience was positive. We did have Emily's counts checked because we felt her platelets were low because prior to going she had a nose bleed. Her white blood counts are going up 0.9 (which means no nuetrapenic fever, which means no stay in the hospital), her platelets were 22 and Dr. Bagatell said there policy is not to give platelets until at 10. She did have a few nose bleeds today but nothing that lasted over 5 minutes and we figured waiting until we were home (since she has clinic on Wednesday morning) to check her counts again to see if she needed platelets would be best in case she had a reaction at CHOP. She spent a lot of time reviewing Emily's case and she didn't feel that what she reviewed was really anything different or abnormal from other cases that she had looked at and that she wasn't sure what was causing the confusion on Emily's case. However how Emily was diagnosed and the treatment she is receiving is where she should be.
I am happy that Doug and I have done our research on this disease because it really helped knowing what was going on and what to ask. It seemed as if Dr. Bagatell was surprised that we knew what we knew, however I am happy that we know what we know and happy that Doug has done as much research as he has done. We did also learn that there are other parents at CHOP that are using Traumeel and are also having positive outcome just as we are, which is definitly great to hear because no one seems to have heard of this at home.
So we head back home tomorrow and Round 4 will start on Monday. We have enjoyed spending time together and camping.
Heading off to bed now!
(Sorry I realized that I didn't take any pictures today!!)
My newborn son has neuroblastoma, his has not shrunk after 2 cycles of chemo which after reading your blog I can understand is a positive not negative thing. Luckily his has not spread anywhere else so we hope for a full recovery, just not sure how long this will take. Thanks for sharing your story as I am finding it so hard to share mine.ReplyDelete
I am so glad to read that Emily is feeling better and that the treatment is where it needs to be. I think about you all daily and always include you in my prayers. Enjoy the family time together and good luck on Monday!ReplyDelete