Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

Emily's Journey's Most Recent Facebook Post

Monday, June 20, 2011

In the Hospital Again

Well I guess the fever didn't want to stay away for Emily.  Friday evening, her temperature was 101.7 under the arm and just before we left to head to the hospital, it was 102.2.  So we woke up Jessie and Brianna who was fighting sleep, so she hadn't gone to sleep yet and we headed on about 1130PM.  Doug and I thought we had this one and we were in the clear of the fever.  We really did.  We knew this time, it was going to land her a visit for the weekend of admission. Emily hates the hospital, and so do we.  We were trying everything in our power to keep her out of the hospital, but to no avail.   It was bound to happen and we knew it would when we left finishing up Round 6 just last week telling everyone we would see them in a few days.  I have to be honest though, I took this admission rather emotionally.  Emily didn't have a temperature when we got here, but because she had a temperature before we left, they had to admit her.  Emily had fallen asleep while we waited for her counts to come back.  When they came back, her WBC was less than .1 like it was in Round 4 and everything else was decreasing also.  Of course this is expected during chemo treatment, but the reality of it just sucks. Emily was admitted and honestly I feared her waking up, because I knew when she did she would be so upset about the stay here.  Well she woke up when we got to the room and she flipped out. Finally I get her calmed down and then the room we were put in wasn't the right one because something was wrong with the bathroom, so she got moved again.  Which meant she got upset again.   Finally got her calmed down and we were off to sleep.

I really hate that she has to deal with this. She has done everything that we have asked her too, taking tubby's every night, being very careful about everything, taking her vitamins every day and the fever still came on.  Something else that Emily has been doing really well at doing, is swishing and taking her glutamin during Roung 6, and awesome news, Emily still doesn't have mouthsores and if she was going to have them, she would have had them by now,  So come transplant, she will be using both Traumeel and Glutamin.  We are so happy to hear about this and not having to worry about that part of it, so this stay here she is eating.

The reality of cancer sucks, we stay pretty positive most of the time and really try to look at all the good things most of the time.  But, we are not always positive.  Its hard to be that way all the time, especially when you are in the hospital and you are sick.   And when you have to be away from home in a hospital, this place where has become our second home, really sucks.  This hospital is just not a hospital where a child would want to come and stay.  Children's Hospital of Richmond, is really not like a Childnen's Hospital and this place has a lot of work.  Ran into a mom today that we see here quite often and she said, "There isn't much to do here huh, besides walk around?"  I said, "No, and it is actually quite boring here. The rooms are small, they are not decorated to appease a child and they are just not Children's Hospital Oriented.

Like I said earlier, this admission was not only hard on Emily emotionally, but also on myself.  Sunday (today) was Fathers Day and I was looking forward to doing somethings for Dougie with the girls.  Father's day was coming and like on Mother's Day Emily was home, and I so wanted that to be the case that Emily be home for her dad and help me make a nice dinner for her dad and do some pretty poses with Emily that we could do a card. It just didn't turn out that way.  I know we can celebrate it next weekend and Dad is fine with that, however it was just another one of those things...Life isn't normal for us..  It possibly could have been the reality of things, however last night at midnight she had a fever of 100.7.  So, blood cultures were drawn again, CBC done and that meant another 24 hours of no fever.  During the day we do well with no fevers, it when nights nears and/or over night. CBC last night still showed less that .1 and everything was still dropping.

These stays get harder and harder, Daddy comes to visit with the girls and goes home at night, no one else visits, and mostly we get texts of "Hows Emily doing?"  These stays are hard on Emily, because she just wants a normal life (whats normal anymore??) but that of staying at home and going to school, but they are also hard on Doug and I. Daddy does a lot of running, since we eat organic of going home and making meals and coming back with meals, keeping the girls at home, keeping up with the house while we are here and just trying to maintain home and all that needs to be done, while I am here with Emily.  Watching Emily fight, we fight with her! She amazes us in how strong she is, and all that she does.   I've found myself to not be much of a phone talker these days (probably months) and a lot of what I feel and think are pushed out on Doug and/or through the blog.  I've come to the realization that my kettle pot is full and it is going to boil over sooner or later, because my fuses are short, I can only handle but so much and my emotions are even more now than they have been in a long time.  I cry so much easier these days.  I try to be strong, I don't like to get upset, because it makes it hard on Doug, and I want to be strong for him to.  Doug thank you for being a rock and for being the person that you are.  Doug and I have been there a lot for each other. We have had the \wooden swingset for a bit now, but there hasn't been time to put it up. Doug really wants to get it up for Emily and the girls, but we aren't home.  Prior to admission he had planned to work on it Saturday, unfortunately that didn't happen and we were here. So, for now it sits..

Emily has had a good day today, no fevers, we have played cards, played with Brianna and Jessie, walked the halls, painted her nails and toenails, played games and eat.   As the night has come, temperatures are starting to go up.  Last was 100.2 and 100.4 is a temperature.  She is supposed to go home tomorrow in the morning if she remains fever free, so please hope that the temp goes back down and WBC and ANC goes back up.

Some other news...we are quite busy coming up with all that is going on.   We have all of Emily's scans coming up, and I saw someone use the word scanxiety, and you know this word is definitly a great word to use, because I definilty can feel the anxiety about the upcoming scans, because I just want to see everything gone.  Clear, NED!   Some of the scans are starting this week.  She has a 24 hour urine test that she is currently doing now to test her kidney function for the Stem Cell Transplant coming.  Stem Cell Transplant is scheduled for July 15th.

Prior to Emily's admission for Stem Cell, we received the best news last week that Emily's Make a Wish to Disney World had been approved and we were scheduled to go on July 6 through the 12th.  I can't tell you how excited we all are about this trip and how we are looking forward to forget about that word "C" that has been so much consumed of our lives and have a good time, is needed.  We are all looking forward to this and Emily is overly excited about it as well.

Happy Father's Day to Emily's wonderful dad.  He would do anything for us and has definitly showed that throughout this.  Doug, we love you very much.

I'm beyond exhausted and heading to work tomorrow morning, so I need to get a little bit of sleep and I know the nurses will be in soon to do a CBC and possibly a blood culture.  And if platelets are still very low, they will need to do a transfusion.  So, I should really try to get some rest now.

Have a good rest of the night and hug and kiss your babies and love them.

Love to all,


  1. Oh Shannon, I am so sorry to hear that but at least you can tell her she is going to Disney World!!! That is so exciting for her and you guys all deserve a vacation more than anyone I know. Lots of hugs to you all and Happy Father's Day Doug!!!

  2. So excited for you all that Disney is on the horizon! Much needed R&R! That will be an awesome relief. I hope all works out perfectly so you are able to go. And sending positive vibes out to the universe for you to have a fever free, normal as possible week!

  3. I am so sorry you ended up back there. It's tough, I thought I was going to lose my mind this past week when we were there! Guess I know what to look forward to after Round 6... :(

    So happy about Disney World though!! I hope you all have a wonderful time and don't even think about the C-word! We are a little behind in the Make A Wish process, but someone is supposed to be coming to talk to us within a few weeks. I think Allison wants to go to Disney World too. :) Hope you all head home very soon!!