Stable Scans

Once again scans are stable!  Two of Emily's spots have an increase of uptake and one of the spots is gone. Dr Sholler again offered if we wanted to do the other DFMO trial with chemo we could, however we decided to keep Emily on the Conpassionate Use of DFMO trial she is currently on. There are no new spots and none of her spots are bigger, so we will take stable!

While we continue to long for NED and to hear those three words No Evidence of Disease that so many other families hear , we are happy that Emily continues to thrive! She has been complaining of back pain when she bends over, but we are not seeing anything to accompany that pain. Emily can go to school and have friends and enjoy things, so we are happy with that. She wants to be done with treatment and we too long for her to be done with treatment! 12/23 marks 4 continuous years of treatment with no stops and she deserves to have this one day! We had hoped we were going to hear those three words though because we wanted to have a huge party to celebrate all that she has been through!! One day we will hear those words, but for now we will continue to hold her hand and fight with her!

She heard her friend Molly, that we had lunch with, was done with treatment and that she was NED for 34 months. She said she wished she was done with treatment like her but that she was so happy for her and that she deserves

 it. Emily always amazes us with how strong she is and how she is happy for her other friends!

So for now Emily will continue on the DFMO trial and we will come back to Michigan for scans in late February or early March! Dr Sholler is happy with how she is doing so we wll continue on. 

Please continue to keep Emily in your thoughts. Also remember that we are still collecting bandaids until December 15th, so send them on!! I don't think we are going to make the 5000 boxes this year but we are happy with how many people have helped and continue to do so!

Remember to hug and kiss your kids and tell them how much you love them!!

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 

Emily Update

Thankfully no fevers overnight. She was 99.5 at one time but it came back down! She seems pretty sad but we are thinking she is just ready to get home to see her dog and be home with all of us...Her ANC is still 0 today but since no fevers they will let her go home sometime this afternoon. Her platelets dropped again, so she will be getting a platelet transfusion and then wait a bit after and check them again to make sure they go up. I understand they also want to see if her body has built an antibody against platelets since they keep dropping, but we are hoping that it's just from her counts being low. Her hemoglobin dropped also but they would like to wait on that and see how she does.  Also Dr Gowda emailed and asks that we stop all chemo until her counts have recovered!                         

Still see quite a bit of her on her pillow and clothes, such a bummer that this has happened again, 4th time of losing her but. Again when she starts to notice we will talk to her about it!

Please continue to keep Emily in your thoughts and sending lots of love! 

#emilyhubbeldotcom

#emilysjourney

#neuroblastomasucks

#emilyupdate