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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Thursday, March 10, 2011

Wednesday, March 9, 2011

Photo of Emily on playdeck here at the hospital.  We went outside for about 15 minutes yesterday to let her walk around.

So Doug says people are waiting for you to update about Emily and honestly sometimes I know I need to update, but the words run around in my head, my thoughts go array and I don't know what the heck to say because I start to write sometimes and just get lost. 

Anyway...yesterday Dr S came by to visit Emily and I and I explained what had happened and how I was upset by what had happened.  I am starting to believe that people around here don't like me, but honestly I don't care, because I am here to make sure that my daughter is taken care of in the right way and everything is done like it is supposed to be.  I'm on top of stuff and don't like anything roll off, because I make sure that things are done right. She did explain about the levels of the HVA and VMA and the nurse practioner explained it wrong. Ugh could I say, listen lady we have already gone through enough, and already worried enough, do you need to add more with wrong information?  But she explained that the levels that NP was looking at could change daily or even hourly based off of what you eat or drink.  I also explained to Dr. S about the overnight doctor who came in demanding that Emily be put on D5 and she added Emily didn't even need to be on any fluids since she wasn't on chemo.  She did tell me that anytime I don't agree with something or something doesn't seem right or that I can't get the answer I need, that I need to tell them to page the oncall oncologist and I need to speak to them over the phone.  Trust that I will remember that next time.  We walked through Round 3 of chemo and she explained what everything was, especially the mannitol which I wasn't familiar with.  While I knew the medicines were different this time, but what I didn't realize is that that were running for longer and I knew that the Cisplatin was quite toxic.

Emily didn't do all to bad yesterday except for that she didn't want to be here, she is tired of being here and is so so ready for Home Sweet Home.  You know no matter what we do here, it doesn't help, which makes life really hard to think that in a couple of months Emily will be undergoing Stem Cell Transplant which means we will be here from anywhere to 3 to 4 weeks. She is going to go crazy!  Too bad the rooms can have change overs for when children come in to cater to their needs and their likes.  Last night she did run a low blood pressure, which the nurse was concerned about,  but after about half of hour when she rechecked it, it was normal.

So, while I already officially hate cancer, I hate it even more.  I really do.  Cancer sucks and even moreso NB sucks.  Doug and I read so much about NB and honestly a lot of it isn't good, thankfully there is positive stuff out there, which keeps us going because we know that we are going to get through this. But we OFFICIALLY HATE THIS CRAP! However what makes life hard is that Doug's step mother has cancer and isn't doing well. Grandma Connie we are thinking of you all the time and we love you more than you can ever imagine. 

Today was Day 2 of Round 3.  During the day I could start to notice the side effects settling into Emily's little body!  The grumpiness was definitly increased today and being funny with Emily I wrote a little note to put on a big sticky on the door, "NO GRUMPINESS ALLOWED".  She laughed.  During the day she started to complain of stomach pains and I noticed she wasn't eating as much, but she was still eating.   I got a call from the sitter also saying that Brianna felt warm and hadn't eaten much today.  Seriously really!  AGAIN?  She was just sick, we don't need her sick again especially with Emily coming home either late Friday night or early Saturday morning.   So Doug brought us dinner for the evening and then went to get Brianna and stayed home with her just because we dont' want to get Emily sick!

Jessica came by to visit tonight and while she was here Emily complained that her stomach hurt, she tried to drink some water to calm her stomach and then she said in a hurry I need to go to the bathroom and got off the bed.  As soon as she got off the bed, she got sick all over the floor.  Soon thereafter started to cry for home again!  I felt horrible for her, I can't even stand to get sick, much less watching someone else get sick and my daughter at that being the one.  I don't like to see my kids sick and when they are, I really hate it.   So needless to say I hope that this isn't the start of a rough time because Emily already had a pretty rough day and doesn't need anything more to make it worse, it should wait. 

We are praying for an comforting night of no getting sick and so far so good.


  1. My heart goes out to all of you. I can't imagine as my LO is almost 2. My thoughts and prayers are with you all right now.

    Terri, RN

  2. My heart goes out to you. I can attest to the fact that they probably don't like you there. Good! That means you are doing your job as Emily's mom, protecting her from what little you can at this point. I, too, went through a similar thing 21 years ago with my first born. Not cancer, but organ transplantation. The staff HATED me. It got to the point where I stopped allowing them to do ANYTHING to her without first hearing it from her doc. I spent countless hours in the research library doing my own research and demanding answers for things that just didn't make sense to me.

    I pray for your little beautiful angel, Emily, that she can have less sickness and more good "smiling" days!