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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Tuesday, June 14, 2011

Tuesday, June 14, 2011

hank you everyone for you sweet messages for Emily and saying have a good weekend camping.  We read every message, so again thank you!
Its Monday and we had a great weekend. But the weekend is over and it is now back to the real world.  I would have to be honest and say you would never know that Emily had chemo last week because she is just so happy and eating and doing great.  However, remembering this is exactly how she was after Round 4, it still worries us that she will get a fever and land herself in the world of hospital for another 9 days or so.  So, we are just being extra careful and trying to keep her away from the nasty ol germs.  Being so careful to make sure that she doesn’t get sick, Jessie has the sniffles, runny nose bit that last night I took her to Kid Med, just to make sure she didn’t have anything.  They showed her right ear was swimmers ear and that her she had a red throat, but the red throat could be from the runny nose or the swimmers ear and she most likely had that of common cold.  Unfortunately they couldn’t give her an antibiotic since she wasn’t diagnosed with anything, they did check for strept and right now it shows negative, but the doctor said if she has a fever to bring her back.  So, we are in high mode of making sure that Emily and Jessie don’t have a lot of contact right now to make sure Emily doesn’t get sick and to make sure that really none of us get sick to get Emily sick.  I think what worries us the most is that when Emily’s counts are zero, getting sick could be fatal and that is what worries us the most and we just have to be extra careful!
 Like I said, today was back to work and honestly it is hard to adjust being back and worrying will my phone ring that she has a fever, but it is just one of those things, a parents worry.  A worry to add into the mix of all the other worries that a parent may have.  And while I was worrying if my phone would ring with the fever, my phone did ring today while I was in a meeting and it was Emily’s, oncologist, Dr. Gowda.  He called to report that he received the percentage rates back on Emily’s tumor from the pathology and honestly it wasn’t the phone call that I expected and wasn’t the results that I expected.  He indicated that 30% of it was active neuroblastoma cells, 30% of it was ganglioneuroma and the rest of it was ganglioneuroblastoma.  Of course this wasn’t devastating news, but the 30% active cells isn’t what I was expecting, I understand that the chemo is what has been attacking this tumor, I get that and Dr. Gowda even explained that. For me, it was a bit devastating because it blew me down from where I was just moments before that phone call.   I did call and update Doug and I think we both really thought all of it was no longer with no active cells from the chemo and it worries us that it may mean possibly that there could be some in the bone marrow.   He did indicate that the tissue on the outside of the tumor was clear, which again is a good thing, but of course still worries the hell out of us.  Like I said it wasn’t the call I was expecting and it kind of threw me off.  We start all the rounds of scans and everything next week, and Dr. Gowda did indicate that we should know by July 1st whether Emily is NED (No evidence of Disease) or not before going into the stem cell transplant.  Stem Cell Transplant is not an easy task, so we are just a bit worried about it.  At this time, I'm in such a different place about the scans now that the 6 rounds of chemo are completed, I am getting nervous about the scans that she has to go through.  I want her to be NED before going into this stem cell, so I’m just at the point now where my nerves are starting to eat at me knowing they are coming up.  Over the weekend I had a  lot of unexplained anxiety and honestly I didn’t know what was causing it, today it just all came to light because when I got the call I felt one coming on.
 You know I’ve said this before and I will say it again, I hate cancer.  NO ONE will ever know how we feel on a day to day basis and what we are going through, no one, except for those who have walked or are walking in this journey.  It’s a hard journey and everyday brings on something new and while Doug and I try to stay strong for Emily and the girls, there are just some days that are really hard.  Yes there are days that Doug and I cry, there are days that Doug and I laugh with the kids.  But just overall, its hard to handle any stress of other things when this is enough stress, we just don’t need the added stress and honestly neither does Emily. We are Emily’s biggest advocate and would do anything to take care of her and make sure she is safe from any infection, no matter how small or big.  She is a strong little girl (“big girl” to her) and she amazes us every day in what she can handle and just how well she handles it.  I look at her and she makes me smile just knowing how amazing that she is.   But I have to thank my husband for just being there for me, because today I just had a rough day after finding those results out.  It just kind of of overcame me and really bothered me along with some other things.  Its Doug and I against cancer and we will be there for each other like we have been since the beginning... Overall I love seeing Emily fight, but if you were to ask her what she was fighting for, she would not have any idea.  Emily is strong and I am happy that she doesn't know what cancer is, because we just think the word cancer is too big for her, honestly its too big for many of us.  She is so innocent to all of this and she just fights to be her and honestly we love it.  She is one amazing girl.  Doug and I look at her and she makes this house complete, she may not be our last born because of course that would be Brianna, but Emily really does make this house complete.  She has taught Doug and I so much, and I love what she has done for us!!
 This weekend while we were camping, my friend Penny and her husband and kids came in on Sunday camping at the same place we were at.  I haven’t seen Penny in so long, it was great to see her and to meet the kids.  Her youngest, Ella was 4 and the oldest, Ely was 6.  But they both know all about Emily and hadn’t even met her.  She loved her and it was just so cute.  Emily met Ella at the camp store when they were coming in and honestly it was cute because after they left Emily was just so sweet that she wanted something for her friend Ella.  She always thinks of everyone else before her and at the age of 4 it just amazes me how she is.  She misses Jessie when she is gone and gets upset and Emily and Brianna, they are just so close.  Even Penny commented on them holding hands and Brianna is only 20 months, just amazing.  Emily is really good with Brianna and they are so funny together.  But she is like that at the store, she wants to get something for all of her sisters, and not just herself.  That is just how she is.  Emily has talked about Ely and Ella since we have left.  She bonded with them in that short period of time, but she just felt so comfortable with them.  My hope is that we can get together more with Penny and the kids.
Its time to end this for tonight, I have to get some sleep and head off to work tomorrow.  I'm exhausted and just still just a bit emotional.  Doug and I really just want to say thank you so much for what many of you do for us, thank you can never be said enough.  THANK YOU!  Thank you for just your comments because they mean so much to us.  So again, thank you!
Please remember to love and hold your kids tight.

1 comment:

  1. Father God, Please give Emily and her family the strength to keep going. I pray that her scans show 100% NED and that she lives a long and happy life. God Bless her family. In Jesus name I pray, Amen