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Thursday, April 21, 2011

Thursday, April 21, 2011

I have been trying to write this post for 3 days now.  I have been working at night time and then when I'm tired and ready to go to sleep, I pass out!

While this has been really hard on our family that Emily is here in the hospital and fighting a fever, there is always someone who is fighting and dealing with so much more.  Please stop over to Nick Franca's page and please leave some love and prayers for Nick and his family. Nick's family received some news about Nick that is a lot for them to deal with! Nick we are thinking about you!

Tuesday night marked 7 full days of being at the hospital and Tuesday night also marked 7 full days of having a fever.   Tuesday night at 730PM Emily had a fever of 102.6 and I feared that she wasn't going to shake this and the time here just seemed like it was going to add on.   So since she had another fever, they had to do blood coultures again.  Blood cultures have to be done every 24 hours that she has a fever to see if she has any bacteria going on.  The labs test them and they are reviewed at the 24 hour mark and 48 hour mark, but a computer is constantly checking them every hour and alerts someone to look at them if they see something wrong.  They also then hold them to see if they have any fungus growing. It has been very hard here because Emily hasn't wanted to deal with anyone but me.  Dad and I have asked her several times if Dad could stay here and she freaked out.  We know how the night would turn out that mommy would be packing up the girls and coming in the middle of the night to be here at the hospital with Emily and then daddy taking the girls back home to hope to get them back to sleep.  She really hasn't talked to anyone else while being here this time either except for me.   One of our nurses told us when she was younger and in the hospital a lot , she didn't want to deal with anyone else either but her mom, so what is Emily is doing wasn't abnormal, but I also know we are doing the right thing for her.  We are trying to not put as much on her as possible.

After being fed up with still being here, I was finally able to get the doctor to add in a medicine for fungus and they moved her CT scan from Friday up to as soon as possible so that they could look for fungus and also do the CT scan to send to Philadelphia.  So, they did her CT scan on Tuesday night around 7pm.  I must tell you all it was one of the quickest CT Scans Emily has ever done before.  EVER.

I will tell you all this has been really hard on me.  Emily has been very clingy to me (such as right now as I type this, she is holding on tightly to my arm), which honestly I love that my girls want to hang on me, however what I am having a really hard time with is that she hasn't eaten now in 3 days and she cries about everything because just about everything upsets her.  And the cry is kind of a quiet painful cry and she is having a very hard time. Wow what am I talking about, I am having a hard time and so is Doug and the girls.  I watch her and she has been crying over her sores in her mouth and every time she tries to drink or even try to eat, it hurts her.    We also think it went down into her esophogus this time because Emily doesn't drool much and since we have been here, Emily hasn't been swallowing much, so she has a pool of drool and when she goes to swallow water, she holds it in her mouth for awhile and then swallows it and it looks painful.  We have been trying to get her to eat anything and Tuesday night and Wednesday night the only thing we could get her to eat was half a thing of jello.  Hey it is something so something is better than nothing and we are ok with that.   Early Wednesday morning about 4AM she woke up to go to the bathroom and I noticed she has fresh blood on her leg.  So, I wiped it to see if she cut herself and there was no cut anywhere on it.  I then saw blood drip from her binky that was in her mouth and pulled her binky out to see blood lined in her binky, and her teeth were covered in blood.  So freaking out I called the nurse and then had her start to swish so I could figure out where it was coming from.  From one of her sores on the top of her mouth you could see the skin over her teeth, so I was getting qtips trying to clean it up.  She wasn't crying with me touching her which was awesome, because for at least 3 days straight we used so much trivalent and baby orajel to get the pain in her mouth settled. She would even hold the sponges in her mouth with the trivalent on it it hurt so badly.

Wednesday morning things were starting to look up, because by 730 AM Emily had gone 12 hours fever free and her counts moved from <0.1 to 0.2,  Woo hoo.  We were not in the clear by any means because Emily had to hold 24 hours fever free and counts continue to go up. By Wednesday night at 730 PM when the nurse came to take her temperature, I was on pins and needles worried.  Worried she would have a fever again, however Emily did not.  She made it to the 24 hour fever free mark.  Although she made it to 24 hours, Emily still isn't herself. Its hard to see her this way because we have never seen her this way.  Doug got here at 830 last night because he took Jessie out to get her some clothes so when he got here last night I just broke down.  I really try not to break down often, but just watching Emily and see how she has been it just finally hit me.  It was all the last straw effect.  Emily always amazes us, but honestly seeing her feel so down and blah, it really upsets me.   Last night at 1215, Emily said she was hungry. Wait, really?  She ate half a cup of jello and ice water.  She looked exhausted while eating it and you could tell it hurt her mouth to do so, but I really think she was hungry.  However as her counts continue to rise, the sores will go away.  Thank goodness! Emily was up until about almost 2AM last night which was surprising being that normally the IV benadryl that she had gotten around 10 would affect her, but it didn't seem to last night.  It was nice to have her awake, we walked Daddy and the girls to the door and then walked the halls for a bit and then even went to the playroom.

From the site of the tumor on the CT scan, Emily hasn't had much change from after Round 2.  I was really bothered by this when Dr. Kahn was telling me about this, however I think he saw my look of disappointment and told me not to worry that this was not unusual and most likely means that it is benign. He also indicated that those that have major changes means that the cells are dividing faster and also that you can see the mass of the tumor until they actually go in to do the surgery. While this is good to hear, I'm still nervous about it, but will have a positive outlook on everything will be ok.   The CT scan needs to be sent off to Philadelphia, Dr. Mattei for review so that he can see about how long he thinks it will take him and then schedule a date (that can always changed based on Emily's state of well being, counts and feeling and just in general...5th round is back to the cysplatin) with our doctors here.

Emily was previously scheduled to start the 5th round of chemo on Monday, however Dr. Kahn indicated her counts won't be ready for start on Monday, so he will have her come back and be checked next week and see about maybe Friday admission to start the next round.  Wow, the next round.  Am I really talking about the next round.  Yes, Emily only had about 4 days at home and then it was back in the hospital for 10 days.

Doug and I were talking though because the accumulative chemo has really given her the accumulative effect  of side effects has really gotten her.  We are going to be so much more careful, we have already been very cautious, but I think we are really going to be so much more cautious in hopes to keep her out in between rounds.  Its not fair to her to have be back in the hospital in between rounds, so stepping up and even being more cautious.  So friends and family sorry if we annoy you, but we gotta keep her healthy and out of this hospital, so things are going to be a lot more cautious about things.  I will be honest 10 days in the hospital, I'm ready for a bit of normalcy and going back to work and being with our family.  I worked at night time here at the hospital, but its not the same as being in the office with my co-workers.

So, it looks like Emily will be able to go home later today. Her counts are still considerably low, 0.9 to be honest.  Her platelets were low so she will be getting her 2nd platelet transfusion this week (2 blood transfusions in 10 days and 2 platelet transfusions in 10 days, thats all new territory for us also).  So, we have to be very careful that Emily doesn't get sick again! Easter is Sunday and my parents invited us to the house for Easter where the whole rest of the family will be, however I don't think we are going to be there.  For many reasons...to many people and I think we just have to be careful and not put Emily around too many people anymore, plus she still isn't herself...will she be by Sunday, can't push it...and if she is feeling at all ok we are going to take the girls camping, its Spring Break week, the kids need some time and going camping we don't have to be around anyone but us.  

So, we wait for Platelet transfusion and the doctor to come around and then hopefully Emily will be disharged before 3PM our nurse said.  Boy would that be nice!  I don't even know what the weather is like outside.  I miss my girls.  Doug brought them here to the hospital everyday in the evening but it was still hard to get some time with them here in the hospital because Emily was attached to me.  There were days that Doug would come in and Emily was laying on top of me and I was holding her like a baby.  I miss Doug a lot and just being with him. So I look forward to this weekend with our family.  Emily is kind of used to being here at the hospital, but I think it is all the drugs that she is on and the IV Benadryl, but I'm ready for her to get back to herself too. Doug I must really thank you, sometimes I don't feel like I don't it enough, but you did an amazing job this week just keeping the girls together at home and having to do all the running around and making sure they are fed and also making sure we (mostly myself since Emily hasn't really been eating) are fed.   You are an amazing father, stepfather, and husband and I really appreciate all that you do for our family!  Brianna and Jessie, I miss you girls so much.

So, as we head into Easter, I wish you all a Happy Easter, not sure that I will be updating again until next week because I plan to spend all the time with our family because I have missed them so much.   We are now just waiting for platelets and the doctor and hope to be out of here before 3 today!

Thank you everyone for all of your well wishes for Emily to get back to healthly and for just being there with well supportive thoughts and wishes.  Thank you!!! 


  1. So so happy to hear that Emily will be leaaving the hospital. Been praying and hoping with all my might for that beautiful little girl and your family! I can't imagine the strength it must take for you, your husband, and Emily to continue on day after day with this struggle! Your are an amazing family! Will keep you continuously in my thoughts and prayers. Enjoy your Easter and your special alone time with your other girl's, your husband, and Emily! Thank you for sharing your story with us all! Much love, hugs, and blessings, and for a very Happy Easter!

  2. I am so sorry. Have a wonderful Easter and make some amazing memories!!!

  3. Hi Shannon,

    My name is Steve Venegas and you posted a comment on my son's Facebook page (Gavin's Prayer Wall). I read your latest blog entry and understand your frustration. My wife and I have been living in a hospital or the Ronald McDonald house since November 19, 2010. Before that we spent May and June 2010 in the hospital while our twins were in the NICU. In that time we have met a lot of amazing people facing insurmountable problems. All of us have broken down mentally, physically and emotionally at one point in time. The best thing you can do is reach out to the people around you and continue writing the blog. I know Gavin's page really helps me cope. Tell Emily hi from Gavin and Elijah and that we will be asking Gavin's Facebook friends and our Church to pray for her. My wife likes to talk on the phone so if you need a stranger to talk to and vent just friend her on Facebook and send your phone number. Her name is Corriane Venegas.

    Lots of prayers and love for Emily,

    Steve, Corriane, Niya, Maeve, Ivan, Gavin and Elijah.

  4. I hope you all enjoyed a quiet Easter. I have been praying for you all.