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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Saturday, May 7, 2011

Saturday, May 7, 2011

This was Emily in her outfit going home that Daddy got her. 

We got home about 10PM est last night. We probably would have been out of the hospital earlier than that, but we had a very unorganized discharge.  However, we had a really great nurse, Diana, it was our first time having her over on Central, but she was great and took care of us. And even made sure that we had everything that we needed, which was great and very much appreciated.

Emily had her counts checked Friday morning, which was before her last bit of cisplatin (last day of chemo) was given and her hemoglobin was 7.6 which is relatively low, Platelets were good and WBC was 2.7.   Emily slept most of the day Friday, so as the day went on, I started thinking she needs to get blood before we go home, or it is going to be horribly low on Monday. I asked Doug what he thought and he agreed, so we got the doctor to agree also.  It just made sense, so that we were not worried about this over the weekend and not driving to the ER and sitting in ER forever.  

Emily did get sick a couple of times yesterday at the hospital and also on the way home.  After getting home, changing the sheets, getting the fluids started, everyone eating dinner at almost 11PM at night, we got everyone to bed.  Emily still hasn't had any energy, daddy took a picture of her last night (right before time to go home) and she looked great, but wasn't feeling great.  She has also gotten sick a couple of times today and basically just laid around.  I hate to see her just laying around because that is not Emily.  It tares me up and I can't stand what this chemo is doing to her.  

This morning, I was going to get up earlier and head to Trader Joes and Whole Foods, but going to bed at 2AM, Daddy and I spending some time together just talking,  to get groceries it didn't happen.  I did wake up...but laid in the bed, I looked at Brianna, I looked at Emily, got up and checked on Jessie and then went back and laid down and looked at the Brianna and then Emily again and asked myself, "WHY?"  I just wanted to know why?  Some pictures popped up on my facebook of Emily when she had hair and everything seemed normal and I had just stared at them yesterday, wishing there was a way to go back.  I kept thinking to myself, there must have been something that Doug and I did to cause this and wondering what it is/was...do we need to worry about our other kids?  We have asked this question to the doctors and they also start with well statistics/rates show...yea well we know about those.

Today is my stepdaughter, Elyssa's 10th birthday.  Lots of birthdays this month...my half brother has a birthday and then Emily's birthday is May 30th.  We really want to make this a very special day for her.  Our hopes is that she is home and not at the hospital or even have to be close to one.  We are working on an auction to get funds together for a swingset and our hopes is to have a nice wooden playset up by May 30th that all the girls can enjoy and something for Emily to really enjoy. 

Monday we head back for counts check and to see where she is.  Initially she did really well with this round, and we didn't stay as long as we thought in the hospital which was great, but she really isn't up to anything or feeling good.  I must apologize, but we are going to be rather anal about germs and everything else.  But 9 days in the hospital is for the birds, and if we can stop that from happening, it would be nice.

Tomorrow is Mother's Day.  I am just happy we are all home and to be home with my girls and the hubby.  Enjoy your day mommies and remember just hold your babies tight and kiss them as many time as you can.  :)

Please make sure you all leave lots of love, thoughts and care for Ronan and his parents, because they really need it right now.

Good Night.


  1. Happy Mother's Day !!! You are a wonderful mommy!!! I have been keeping up with your posts about Emily since this all started. I cry most of the time while reading them. Me and my family are praying for you guys and I know Emily will recover from all this and be healthy again soon!!! Love,Nicole

  2. glad to hear Emily is home...Joshua came home yesterday after round 2 of chemo....this one has really made him weak...had to take wheel chair down to van hate to see him so listless and not him self so I know what you are feeling....I keep asking myself as well...what did we as a family do wrong to allow him to get cancer.....I don't have the answer...the only thing that is getting me thru this is GOD HAS A PLAN. i don't know what that plan is yet but I know God will let us know when he is ready....Keep the faith as we are praying for Emily and you all as well.....

  3. Shannon, I am so sad to hear you questioning yourself! Emily is blessed to have you and your husbands love to get through this journey. Life is pretty crappy in that really tough and heartbreaking things happen to really good people. It is awful! Your strength is amazing, and your courage is inspiring!!!
    I hope you have an amazing day tomorrow!! You are always in my thoughts as is Emily and the rest of your family.

  4. glad she is home for mothers day, i hope the day is going smoothly and her counts are good tomorrow! God bless you and your family!!!

  5. Happy Mother's Day Shannon. She looks just adorable and I am so glad you are home. I am promoting too. I want your little ones to have that swing set!! Lots of hugs!!