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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Sunday, July 24, 2011

Day -3 and -2

Here we are, its early Sunday morning (wee early in the AM) and it is hard to believe that we have been here 6 almost 7 days.

Day -3
Yesterday Nanny came by and spent some time with Emily, which Emily enjoyed very much.  They played games, did crafts and took a nap together.  Nanny even stayed with Emily so I could step out and have some time with Daddy and Brianna, which was nice, but yet at the same time I felt a little guilty about leaving Emily!  Yesterday overall Emily had a pretty good day, she did get sick a few times.  However yesterday was the first full day that she didn't eat anything at all, because she said she is afraid she is going to throw up.  Tried to get her to eat several times, but to no avail.  She is still swishing which is a good thing, but she stopped taking all of her oral meds because of fear of throwing up.  

Dr. Gowda went ahead and changed everything over that could be changed over to IV, and the only thing that could not be changed over was the oral meds for the liver.  I was able to get her to take it once yesterday.  

We are still leaving the room and taking walks, which is a good thing that she wants to get out of the bed and we are happy for that.

Day -2
Saturday was a good day.  Emily had a great morning, she was in a great mood and just overall playful and very happy!  It was great to see her that way, because the day before was not like that.  We were able to get her to eat 2 peanut butter crackers and a couple of pretzels. She is still swishing.  Later in the day, you could see that is looked like the energy was just swiped right out of her and she was just very down and tired.  She laid down and took a nap and then woke up to spend a little time with Daddy while I took Brianna downstairs to eat.  Its a shame that the cafeteria doesn't really offer more food or other places to eat at. Emily had a few bouts of getting sick and also loose BMs todays which she really gets frustrated with the loose BMs because she can't control it and then her underwear get messy.  I told her that she can't help and mommy will take care of it, we have underwear and daddy has brought you plenty more. 

Day -2 was the last day for her to receive chemo (cytoxan) during Stem Cell Transplant #1.  Like I said Sunday she will have a day of rest, no chemo and then she will be rescued with her own stem cells sometime Monday.  Dr. Gowda said there isn't specific time that it happens, but that normally it is between 12 and 2 pm.  The process is fairly easy, it is just the side effects from the chemo. 

When the night shift comes on each night, they are required to do a CBC and check other things as well!  Tonight we figured Emily would need a blood transfusion since last nights was 7.3. All of her counts are dropping and Emilys White Blood counts are at 1.3 and she is hitting the lows and her hemoglobin was 6.5 which probably accounts for her low energy levels tonight.  So, she is currently getting a blood transfusion right now that has been going on for the last 2 hours.   Emily does well with transfusions not requiring benadryl.   I can't sleep when she needs to get transfusions at night because I need to watch her to make sure nothing changes or she doesn't break out.  She just came in to do another vital check and her temperature was just 99.9.  I am hoping it was just a freak thing and going to go back down. Not ready to start the temperatures yet or having any infections.  Lets hope that this was nothing but just a side effect from the transfusion and will go back down.

Day of rest and we hope for it to be a quiet and uneventful day and only Emily wanting to play and be happy!    So far things have been going pretty well and we couldn't ask for anything better.

Send all your love, thoughts and prayers Emily's way!
Just want to tell my husband thank you for being an amazing husband and making sure that we are taken care of here by bringing us clean clothes and whatever else we need.  We love you very much. 

1 comment:

  1. She is so brave!! All of you are in my thoughts. Is there anything I can do to help you all? Are you at mcv? All the best and tons of love and strength to all of you!