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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Tuesday, March 20, 2012

Day 2 New Trial

Last night before leaving the hospital we ended up having to get Emily Deaccessed because she could not stand up straight without the dressing tape she had pulling the line and she crying or even move her arm with the same thing happening! Dressing changes are no fun so we opted with just remove it and we will re access it today! Again today she had a hard time but they used a port dressing which is not sticky in the middle and she did much better and could actually move her arm up and down!

Emily was not very hungry this morning and we were worried about already seeing the side effects of the chemo! She said her stomach was upset and she thought she was going to throw up! Zofran was on the way and it seemed to help! And then she was able to eat a little later!

This sucks to put her thru this shit again that we went through before! It sucks knowing that she is going to lose her hair again and her counts are going to drop! We can deal with it but it still sucks! And this is still hard to deal with on us both!

Fluids and both chemos went with success! We did talk with the research nurse today and went over the calendar and what we will be doing for the next two rounds! We have to be back on day 8 which is Monday and then home and then back for a day visit on day 15! Counts will be checked on day 8 with a full physical and a nuelasta shot (to help boost her white blood counts) and then back on day 15 for a full physical and checking counts! There was a bit of an issue with them wanting us to give her a daily shot of the neupagen and we didn't want to have to put her through more hell if we didn't have to! So they were able to change it!

We did finish up the chemo and she did fine with leaving the port in! Yeah! they showed me how to remove it should we have any issues! Hopefully it stays well and no problems! Tonight we will give her zofran before bed and hope it helps in the morning with her stomach and we will also take her peppermint oils with her and those will help!

We will continue to keep you guys updated with how Emily is doing! Please continue to send your love for this to be easy going and no problems!

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