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, February 20, 2014


That's the word.

Today we had clinic to check counts and see how things are. Yesterday she really didn't eat much and we started the megace last night. As of last night she seemed to be real tired and laying around! Thankfully she hasn't had any nosebleeds and no throwing up blood but we have been on top of the medicines and nosesprays to help! It still doesn't mean they are ruling out blood in her intestines and GI! We did have to get a good humidifier for her when she sleeps and that is helping for when she wakes up!

Her blood pressure was up and heart rate was up a little bit, but when we got there she had a temp of 99.5 probably 30 minutes to hour later it was 100.2 (remember 100.4 automatic inpatient). Counts came back and the word was neutrapenic. The first word that came out of my mouth sh$&, ugh! Her ANC was too low to even register! Platelets took a dip again and hemoglobin was 7.8!

So dr gowda wanted to give her platelets since they took such a dip. She didn't have a bad reaction today but of course Benadryl, Pepcid, Tylenol and steroid! Tylenol brought temp down to normal! 

After platelets he wanted blood cultures done since the temp she had and give her a dose of IV meropenem. But if any temp we had back. So with that said, no visitors that have been sick or been around people that are sick and lots of hand washing! Right now we will probably keep it to no visitors so we can stay away from hospital! And no father/daughter dance! But since she hasn't been at school it's not really a topic on her mind! 

Because hemoglobin dropped he wants to see how she does overnight if the tiredness is worse to bring her in the morning so she can get a blood transfusion if not come Monday and she will get it then. Endoscopy has been put on hold because her counts are too low and puts her at risk for severe infections!  But clinic Monday! 

It's been a long week and neutropenic was the last thing we thought we would have to deal with! But we are it's here! We thought these medications were going to give her a break but her body is not like everyone else that has been on this trial and it's taking a toll on her. So etoposide has been stopped and cyclophosphamide she will only take half until her counts come back up! 

Please continue to send your thoughts that no fevers and no more blood issues! We have to wait on checking GI until counts back up!

Thank you for continuing to keep up and checking in! 


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