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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Wednesday, February 20, 2013

Emily Update

Tomorrow marks Day 15 of round 2 of this trial. Emily finished the 5 days of chemo last Wednesday and then she had clinic on Thursday. We had thought it was going to be another quick visit, but Emily ended up needed platelets since they had dropped to 24 and was having a nosebleed. She hasn't had to get any transfusions for a while, so that was her first in a bit and she did well with it. Her weight also showed that she had dropped two pounds.

Emily was doing amazing...the girls had a blast at the Yo Gabba Gabba show on Wednesday evening. This was their first time ever doing something like this, so it was really great that they got to enjoy a night out. Thank you Laura for the tickets. Valentines Day was really sweet, and Emily was so excited to go out with daddy to get mommy a gift. she picked it out by herself from all the girls and she was so proud. It was really sweet, but mommy felt bad for not doing anything for daddy. I love you babe. By time weekend hit, Emily's energy levels completely dropped and she wasn't eating. Emily is back to the couch again and sleeping a lot. Enough to where the teacher has not been here Monday and Tuesday because Emily has been sleeping. She has daddy and I really concerned and worried....it's hard not to worry, but we are. She has complained of pains here and there, where we have given her Tylenol and it has helped. She has also complained of ear pain first in left ear and next night right ear and has continued to be right ear for a the past couple of days. We are hoping that the ear pain is just an ear infection. But we are also hoping that the sleeping a lot, low energy and not eating is from the chemo (even tho it is low dose and shouldn't affect her "quality of life" in this way) or a virus/cold.

Anxiety is definitely building with traveling to Michigan on Monday coming up. It's hard not to think about it and not worry about it. Wings of Mercy will be taking us Monday to Michigan and we will be home Thursday evening. The anxiety is extremely high with so many children who have passed in the last couple of weeks from neuroblastoma.

Like I said tomorrow (Wednesday) marks day 15. Emily will have clinic to check her counts and see how things look there and also receive the IV Avastin. These days tend to last all day in the clinic, so I'm hoping that today will be different. Also hoping that her platelets have come up.

So, in not thinking about the fears, the worries, and the traveling coming up, it's been a busy week and a very busy weekend coming up. We have been working really hard in organizing the house, cleaning and just getting it together...this weekend will be a busy weekend, we have Sue and Jojo coming into town, date night for daddy and Emily (In hopes she feels well enough to do so), making "Team Emily" bags for VCU newly diagnosed families, Saturday night the fundraiser for our family, and then Sunday Doug and I will be married for 6 years.

Sorry for not updating regularly but life has been busy. I really just wanted to give a quick update of how things are and where we are. Make sure you tell your kids you love them and hug them. Good night!

5 comments:

  1. Prayers for you Emily and your family!!! May your beautiful, strong Angels lift you up and carry you through this rough patch helping you save your energy so that it can be used for feeling better!! You are in my heart, thoughts, and prayers!

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  2. Prayers for you Emily and your family!!! May your beautiful, strong Angels lift you up and carry you through this rough patch helping you save your energy so that it can be used for feeling better!! You are in my heart, thoughts, and prayers!

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  3. Thanks for the update. Praying and praying Emily will be feeling better soon.

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  4. SHE'S AMAZING, I PRAY THAT SHE GETS WELL SOON I HATE TO SEE THIS WISH I COULD TAKE HHER PLACE.. GOD BLESS HER AND YOU ALL

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