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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Thursday, March 29, 2012

Day 11 New Trial -- No FEVER PLEASe

I'm sorry I haven't updated to let you all know how day 8 went and that we are home, it's been busy!

Day 8 Emily had a complete physical by Dr Kaplan and everything looked great and counts were checked! While waiting for her counts to come back, Emily wasn't feeling well and got sick so they gave her some zofran! Counts came back and we were shocked to learn that her WBC was already below 1! Certainly not what we wanted to hear because any signs of fevers mean inpatient! He also got the neulasta shot and she did very because I asked them not to make a big deal and just do what they needed to do!

Since she didn't need blood we decided to drive home, long ride home made for a late night but we made it home!

During the week Emily has done fine however yesterday we noticed Emily didn't have a lot of energy and she didn't want to be messed with at all and wasn't really in the mood like she wasn't feeling well! She had playful moments and then other moments where she was very down!

Today marks day 11 and we are here at VCU having counts checked and see where things are! Emily counts are severely neutrapenic and her platelets and red blood are low! So we have made it a day at the hospital of getting blood and platelets! It makes for a long day here! Emily has fallen asleep rubbing my arm and is ready to go home!

We are worried because Emily is severely neutrapenic and on Sunday we were scheduled to leave for north Carolina for a meeting and a complete physical with Dr Kaplan on Monday! If Emily is inpatient here because of fever how will that work!?? Our nurse contacted the research nurse there and she said well she will just need to come here once she is released from vcu Our hopes is that we have no inpatient stays due to fever and just keep charging forward! That would be our hopes!

Here it Is 8 pm and we have that feeling that the fever is going to come which is going to cause inpatient! It was 99.7 up to 100.4, hit 101 and she has to go!

So I ask you tonight tell the fever to go away and find somewhere else to go! Chemo we do not like you but have faith that you are doing what needs to be done!!

Love and hug your kids and tell them how much you love them! Give some love to Ila Jean and brook Hester who are both progressing! Love to Ethan as he is moving into Mibg therapy soon! Love you guys!

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