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, July 19, 2011

Day -6

Sunday night, Dad and I didn't sleep well at all just knowing what the coming days are going to be like and what we have to put our daughter through.  It really sucks to bring a happy girl who just had an awesome past 2 weeks away from the hospital and having to bring her here and just bring her down all over again.  My thoughts are F Cancer.  Sorry, but it is what I think!  One of our friends son, Wilson, who also had NB and he is NED and finished with his line out (yeah) she made him a shirt that says F Cancer so whenever he comes to the hospital he was wearing it.  Love the idea.

Monday morning came all to fast for us to have to bring her to the hospital. Seriously never thought we would be staying at the hospital for more than the 12 days (like we did at the very beginning) so starting the day knowing 3 to 4 weeks, oh just breaks my heart knowing what she will have to endure. Day -7 went well though, the only major break down was when Emily had to take a shower (on command) and a dressing change.  Taking a shower is not something she has done since she had had her hickman line, so she is always very careful not to get it wet (which also means no swimming or anything of that sort). Once the shower was done, she calmed down and was fine.  Basically there is a lot of swishing that she has to do besides the normal swishing she has done during chemo before and meds that she has to take on a daily basis to help with many different things.  So far she has taken them all without help and done the swishing along with the glutamine that we also do.  Our hope is that she continues while the chemo continues this week.  

She finished with Day 2 chemo for today and will start again tomorrow at 10 AM.  The chemo she is getting the first 3 days is the chemo that she has to have 2 showers a day and 2 dressing changes after the shower with bedding changed as well because when she sweats the chemo comes and can sit on her skin.  So, they give me a special antibacterial wash to clean her with in the shower.  After tomorrow she will be done to 1 shower a day and tomorrow she will start the next type of chemo.  Saturday she will be done with the chemo and will have a day of rest and on the 7th day, as they call it, Day 0 she will have her stem cells given back to her.  This process I understand is rather quick.

The hard part is that I can't shower in here, use her bathroom and after Thursday Emily will not be able to have her sisters visit because her counts will drop seriously and cause for infection is very serious during this time. Dr.  Gowda indicated no children should visit after Thursday, so the girls came by today and will come again Wednesday and Thursday and after that will be skyping so Emily can see her sisters. 

Today's shower wasn't so bad because Emily knew what she needed to do.  She did great and I was so so proud of her.  Her dad and I are so so proud of her.  She is such a strong baby girl.  We love her so much. 

Thank you everyone for your special prayers, thoughts, love and Jesse Grace's Uncle who works here at VCU for stopping by and bringing Emily a gift.  Thank you all so much for all you do.  

Again, Many have been asking where they can send things to Emily while she is here at VCU Medical Center.  Emily loves to receive mail and gets so excited when she gets something. Emily and I started a card wall for her today, so everything she receives a card we will place them on the wall. The snail mail address for Emily while she is here for the next 3 to 4 weeks, here is the full address:

Here is the complete address at the hospital: 
North Hospital, 10th floor 
Patient: Emily Hubbel                                                
1300 East Marshall Street / P.O. Box 980157
Richmond, VA 23298-0157

Thank you all so much!!!

1 comment:

  1. Hi Shannon,

    Is the Hickman line the same as a double lumin CVL that sticks out of her chest and forks at the end with a red port and a white port?

    Which drugs is she getting? Jesse was on 96 hours or continuous Carboplatin and Etoposide. And 3 1 hour doses of melphan (spelling that wrong)

    Will she have 4 days of chemo or more?

    Just curious because all this sounds different from how Jesse's was done :)

    Glad Robert got by to see you guys. Sorry we can't make it that way.