Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

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Monday, September 16, 2013


We finally got the call from Dr Sholler tonight. Results are stable with not much change from the previous scans in July. She said preliminary results on bone marrow and MDS are negative, but she will get the final results by Thursday.  Doug and I are happy there isn't any progression and so far bone marrow looks good. Platelets are most likely not recovering as quickly because of the continuing of treatment, but they could be worse. 

We have a few options of treatment, and we will meet with Dr Gowda this week to go over options and what we are thinking moving forward. Emily also needs to have her platelets checked because the last time they were checked was last Thursday.

Right now we could do:
**another two rounds of what we have been doing and go back to Michigan after two rounds
**compassionate trial of DFMO (will have to travel back to Michigan to start this within 14 days of scans)
**TPI-287 (will have to travel weekly to Michigan if we chose this route)

We most likely will do another two rounds, but Dr Gowda wants to also talk about Emily getting some stem cells back to help her platelets. So we have some things to talk with him about!

Emily looks great and has been eating well. Dad and I are so happy with how well she is doing at school and enjoying it. She is growing up and becoming so independent. She told daddy when he drops her off at school if he could just take her to the door so she can walk to her classroom by herself. Daddy said she did well and didn't even turn around to see him, but almost sad that she is growing up. 

Thank you for all the love, thoughts and prayers for our girl as she went through scans.  We are still hoping to hear those words one day of clear, so we will continue on the fight and we are hopeful to get there. 

Please remember to hug and kiss your kids and tell them how you love them!