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, November 3, 2013

How is Emily?

It is the million dollar question that gets asked often and normally the first question we are asked.

Overall Emily is doing well. Round 10 was actually delayed by a week because her platelets were not recovering. They were at 19 and held the round off and gave her platelets. When she went the next week to start they were 23. Dr Gowda actually likes them at 30, but allowed her to start with platelets on board. Day 4-9 was her chemo, and she already started the not feeling hungry and very tired before the chemo started. So, once the chemo started it was even worse.  Dad tries to go everyday that he can to have lunch with her at school to make sure she eats.  This past week she was scheduled to go Friday to have her counts checked, but we noticed Wednesday night that she was bruising pretty bad and Thursday morning she had petechia on her arm. When counts came back, everything actually dropped. Her ANC although not completely low, but it was the lowest it has been in a while, so we are just keeping watch to make sure she doesn't get sick. Platelets were down to 13 which is the lowest that they have been in a long time. So, they gave her 3 units of platelets and want her back tomorrow to check counts and most likely getting platelets. So all weekend including Halloween night we have been very careful to make sure she doesn't hurt herself. She didn't make it long Halloween night though because she was so tired from a long day at clinic and the chemo she is on.  Thursday will be day 15 of avastin and complete this round. 

We just learned Friday that Emily will be heading to Michigan the week of November 11th for scans on Wednesday and Thursday. It makes it really hard to make any set plans when you don't hear in a real timely fashion that you have scans, but it's been what we have been used to for the last almost 3 years.  Scanxiety has already started, especially saying Dr Gowda feels that after 10 rounds of what Emily is currently on if there is no change, that this is really no longer working to "hopefully" clear her and only keeping her stable.  So we really aren't to sure what will be next for Emily.  I know that Dr Sholler has been pushing DFMO, but compassionate trial of DFMO (if she has disease she would not be eligible for the DFMO trial) would only keep Emily stable, and our hope is to get her clear. The fear of keeping disease always means there could be progression like she had last year. 

So, how is Emily? Emily is doing well and hanging in there.  Every day Emily fights and she is so strong, and continues with a smile on her face.  She just finished her first 9 weeks of 1st grade in school, and she is doing well with school. She has been having a lot of headaches lately, but we are thinking that is from the avastin. She still isn't able to be part of gym with her low platelets, so we have had to keep her out of gym.

Please continue to send your love and thoughts to Emily as she continues to fight this horrible disease.  As to be expected, Dad and I have good and bad days with still dealing with this disease and hearing all the horrible things that continue to happen around us. Some days are really good and other days, you just feel awful.  We will always live in fear, fear of this disease, what it is doing in her body and what is happening.  

Remember to hug and kiss your kids and tell them how much you love them.


1 comment:

  1. Hello,
    Glad to hear Emily is doing well. Keep fighting Emily, I 'm praying for you.