more consults, more chemo

We are getting day 1 of round 3 chemo right now. The last week has been a wonderful break! Elizabeth was able to feel good and spend some time enjoying friends and family and painting. We had a consult with another specialist in Cleveland, Dr. Pete Anderson. It took us 2 months to get this appointment and we were thankful to be able to do the visit virtually. It was a great consult and he had lots of good insight. I appreciated his emphasis on living "like you don't have cancer" as much as possible. He encouraged us to get Elizabeth back to as many life activities as soon as possible (including sports, arts, school, social) and to have her immersed in things that she really enjoys. He talked about some research in the works and requested more specific info on the location of the breaks on Elizabeth's mutated gene that causes Ewing's, as he felt this may be relevant for future treatment options that are being developed right now. I was able to get that info from our oncologist here today and also found out that most people don't know this info about their tumor because the tumor analysis is VERY expensive. The only reason that we have this info for Elizabeth is that we opted into a study when she was first diagnosed in 2020 because we wanted to facilitate research for this disease in hopes to help develop treatment for others who get this cancer.  I am thankful now that we decided to participate! We will get scans in June and that will determine how we proceed with Elizabeth's chemo. We are PRAYING SO HARD that this chemo has shrunk the existing tumors! We are also praying for answers to the increasing numbness in her legs. This has been very discouraging for Elizabeth. Dr. Anderson thinks it is most likely related to her chemo, but it's almost impossible to know for sure. We see the neurosurgeon for follow up in a few weeks and I think we will try to get in with a neurologist if he doesn't have any helpful insights. (His main focus is addressing the stability of her back.) We have not been back to Neuroworx for therapy because she's been tired and busy with travel and appointments, but hopefully we can get back soon. We are thankful for the meals brought, the texts sent, the notes and words of encouragement. We are very tired, but stay focused on hope and faith. Thank you for all you do! We pray for you too!