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 22, 2012

Day 4 New Trial

Here we are Day 4 is just about done and ,we are going into Day 5. Last night Emily complained of her feet hurting because they were tingling, which one of the side effects are neuropathy and she also had a really hard time going to sleep.  She cried because she was tired but could not go to sleep.  I held her tightly and she ended up dozing off to sleep around 130 AM. 

Today was a long day in the clinic with counts and blood draws that are required for the clinical trial that Emily is on and day 4 of the chemo. She is doing well with the chemo, better than we thought she would and for that we are happy.  

Her counts are dropping quickly especially WBC and platelets.   Her hemoglobin was also a bit low, so it looks like she may need a transfusion next week, so we will see how things go. We have noticed that Emily stares off into space and seems to have a bit of confusion, but again is taking this really well.  She is not hungry in the morning for breakfast like she normally is, but has been eating very well for lunch dinner and later dinner.   

I will say that Emily does like the clinic here at Levine's, they have rooms for you in the transfusion rooms that are yours to go into and have time to yourself or a table in the middle where the kids can get together and play and you can still see the kids from the room.  Emily has really enjoyed the room and playing with the other kids who have come into the clinic.  Today Emily met another little boy who is fighting leukemia and played with him and had a good time such a sweet boy. 

Tomorrow is Day 5, last day of Round 1 of this trial's chemo and she will be deaccessed and be free for the weekend.  We are hoping she will be feeling well, but we have been taking this one day at a time and honestly minute to minute at a time because it changes so quickly. Monday she will go back for Day 8 and have a head to toe physical with Dr. Kaplan and check her counts to see where she is before heading home back to VA and get the neulasta shot (she is going to absolutely hate this).  We are hopeful for no transfusions, but we will see what happens.

This is a quick update that I wanted to do after working for a while tonight and I am not posting a picture today, but I wanted to update you all on how Emily is doing.  Its been a long and exhausting week and Doug and I are ready for a date night to have some time alone.  

Make sure you hug and kiss your kids and tell them how much you love them.  Sending love to you Jessie, we miss you!

1 comment:

  1. hope thing go well for all of you my prayers are with you