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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Saturday, June 21, 2014

Round 4 DFMO

Well we are starting Round 4 of DFMO. Emily had clinic on Thursday to check counts, do a physical and HMA/VMA! Got to meet with Dr Gowda and had not seen him since scans at end of May. Counts looks great so there is no worry there.  He did say he looked at Emily's scans and based off what he read with the spots being brighter more intense and only one of them not as intense he said they would have called it different than stable.  He said he emailed Dr Sholler and she indicated that on the DFMO trial a patient cannot continue unless there is major growth to a spot or a new spot.  So with that Dr Gowda wants Emily to have her

HMA/VMA checked every two weeks. He said this is the only way to really check without scans until August. He said he felt that if they go up during those times he will do a recheck and then of still up ask for scans earlier. He asked that we just to be on our toes for another trial should something happen and we normally always are.  Overall though Emily is doing great! 

 #neuroblastoma #neuroblastomasucks #emilysjourney #emilyhubbeldotcom 

Sunday, June 8, 2014

Emily Update

Emily is doing great! The current treatment she is on (DFMO) gives her the best quality of life! We are hoping that this treatment is getting rid of the rest of the spots she has!!! But we are happy she feels so good and has energy to enjoy the summer and play with her sisters! She deserves it. We don't have to visit the hospital as much either, her counts look great! Yeah for a treatment that gives her time away! Her hair is taking forever to grow and we are sure that is probably the dfmo!

She will be going to summer school at the end of June to keep up her skills! 

#neuroblastomasucks #emilyupdate #emilysjourney #emilyhubbeldotcom