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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Monday, April 4, 2011

Monday, April 4, 2011

Its 230AM, and I really should be sleeping, however I can't.

First and foremost, please stop by Jenna's CaringBridge Pageand leave condolences for Jenna's family who lost their daughter to NB.  Doug and I have been following them for quite sometime now and I cried when I read this.  

Anyway, just an update to let you know where we are and how things are.  Friday Emily was scheduled to start chemo, however her counts were still low, so we are to bring her back in the morning and see where she stands to start. 

This week is a really busy week for us.  Since chemo is starting tomorrow, hopefully, Doug and I will be Emily tomorrow and he has taken the next few days off to be with Emily at the hospital so that I can go to work and still be off Friday and get done all the milion things that need to be done on Friday. So while I am going to return to work on Tuesday, it is going to be really hard for me to do so.  I hate to leave Emily at the hospital, however she is in good hands, Daddy! Obviously we also don't know if Emily will even be able to make an entrance to the fundraiser, because everything is all up in the air.  However I know everyone will understand.  Emily just can't be around the germs.  So, we will take things one day at a time and see how things go.

You know, I thought a lot about Jenna today and then all the other families who are going through this mess.  Its not fair that any child has to deal with this, any child.  And it is certainly not fair that our child has to deal with this.   Doug and I try to remain strong and every day is different with that, but we do try.  But what also isn't fair is that everyone else who has to deal with it.  The side effects of this is hard on everyone else to, but we all have to make due and just try to make Emily as happy as we possibly can and that is what we are doing.   While we know that this situation is old to many, its not old to us, because everyday brings on a new day and everything is something that we haven't had to deal with before.  And this situation will continue to be something new for us.  

As we walk into a journey of another round of chemo, then surgery, another round of chemo and then two stem cell transplants with extremely high dose chemo.  This is all scary and something that we just be there for each other and show Emily has strong she is being and taking this.   With the stem cells coming up, this summer will be only home and not out and about.  Our plan is to get our backyard cleaned up and hope to get the girls a swingset, sandbox in the backyard.  There won't be the pool this year, lake or water this year since Emily can't get her lines wet or there is the worry of infection. While we won't be leaving the house much, we need to have something for the girls.  They can't just sit up in the house, they need to have something, so we are going to need to work on that.  

Well I should at least try to get an hour of sleep before I need to be up and finish getting everything back together again to head to the hospital.  Mommy is nervous about what this new round of chemo brings.  Please le

1 comment:

  1. My thoughts and prayers are with you all..I have been praying for you all right along. Give emily a hug and kiss for me..thinking of all of you. <3