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 18, 2011

Sunday, April 17, 2011 at 1254PM

SUNDAY, APRIL 17, 2011 12:54 PM, CDT
Emily finally showing some energy and playing with legos before the Tylenol wears off and the next round of fever hits.
Fevers are still persistent actually this morning she had the highest one since we have been here of 103.9 and that was underneath the arm so it probably would have been higher orally!

Yesterday I called Children's hospital of philadelphia to get another opinion and to make sure if there was something that were missing or if we should have them do something else! Dr. Sullivan called me back and walked me through what their normal process is and pretty much VCU is on target except for the stop in the vancomycin, he said they wouldnt have stopped altogether for one day, they would have done a slower infusion which is what they decided to do yesterday and do it over 3 hours! Which Emily has been able to tolerate and not get the redmans again! The only other new piece of information that dr. Sullivan gave me was after day 5 they should be starting to check for fungus! So I mentioned this to the after hours doctor but we really didn't get far with it bc she said we need 48 hours of vancomycin! Saturday was 5 days!

Yesterday Emily also had a serious meltdown, one which I have never seen her do before...the screaming and crying wasn't out of the norm it was the hitting and kicking me! I cried with her! What do you do? I couldn't calm her and all she screamed and cried was "let me go home!" and "tell them I want to go home!" and "leave me alone I want to go home!" it broke my heart but I let her scream it out, the nurse was in here giving her IV benedryl to start the Vancomycin and as soon as she started to calm down the nurse said,"awe she just wants to go home!". And as soon as she said that Emily started again! Geez! She finally calmed down after an hour and a half and went to sleep!

Yesterday I had had enough with everything! It was momma on a road rage because I told the doctor I was done sitting here watching her crying bc of the sores and having persistent fevers which keep in her in and out of sleep! We need to do something this is crazy! Who wants to watch their child like this and what sucks the most is that there is nothing I can do! NOTHING! What I wanted to do was to take her out of here and somewhere else, but more afraid of what that would do to her! So that is why I called CHOP! We can't tell you how hard this is! Its hard that Doug can't be here or even be here over night with her and he is having a tough time with this! We have tried that route of doug staying here and Emily just won't have it! We were hoping that Doug could have stayed here last night with us but it didn't work out that way! I'm just tired of this! These fevers are persistent but all the other blood cultures have come back negative so they think the one was contaminated which CHOP thought that too! But seriously let's get the fevers gone! She wants to go home and round 5 starts in Another week! We dont have a date yet, but if her counts are right she will be ready! Will we? Round 5 is the cisplatin again the one where she was supposed to be there for 4 days and it turned into 8 bc of getting sick! WTF? Sorry this is hard to watch, hard to not take it from her and make it all go away! Why can't we take it away? I would take this away from her or any of my other children, but you can't! We still have go get a CT Scan so it can be sent go CHOP!

We have noticed that her eyebrows are pretty much gone and she only has a few eye lashes left! Her hair has been growing back, but after this last round I have noticed they are starting to come out again! Its starting to get warmer out too so Doug and I have to start thinking about sun hats because since she is on chemo she can burn very easily!

Anyway so tomorrow if no change in fevers which doesn't seem to be changing since 1 hour ago it was 102.2 I told dr sisler we need to start thinking fungus and doing something about it! She isn't here tomorrow but said she would leave a note for dr Kahn! Hey he didn't do anything for us on Friday so we should see how that goes! will he tomorrow? 

Please leave lots of love and thoughts for Emily and hope that this fever goes away! I'm not sure how much more our hearts can take of this! We miss our family together! We miss seeing Emily or even have the energy to do anything! 

This morning she had to get another blood transfusion (2nd one) this week and platelets! We figured she would need the platelets and they were at 5 this morning! Thankfully she didnt have the bruises but I guess since she hasnt had the energy would be why! Just surprised of the 2 blood transfusions in one week and I hate to see her get someone else's blood! 

As for now their is no end in sight as to when to gets to go home! Blood counts were still less than .1 this morning!

Doug has been amazing as he continues to hold down the fort at home and making us meals and just maintaining the normal of what he can! We continue on our organic journey and we feel so much better! I wish we would have started this route earlier! But we are there now! Thank you honey for doing all the running around and holding down the fort with the girls! Hard to believe Easter is next week and we are not ready for it! Jessie starts spring break Monday! We are thankful to having a wonderful sitter who takes care of the girls!

Please love and hold your babies and make sure you tell them as often as you can you love them!
Sent from CaringBridge iPhone app


  1. praying for your sweet little girl!!!

  2. I have been following Emily's journey and I must say you all are very special ppl. Emily is a beautiful lil girl and i am a mom so i cant begin to imagine what you are feeling. I will be holding you all in my prayers. I would like to get Emily a sun hat since you mentioned it. What size should i get and where should i send it? Also, my 9 year old daughter wanted to write Emily a letter. Please email me with the mailing info if its okay. Hang in there. Also, props to ur hubby. Sounds like he is wonderful. I will be praying extra hard for lil Emily. Her eyes are so full of love and her smile is gorgeous. You have a special girl. Im sure you already know. My email is tlsmith1224@gmail.com. With love, Tamara Smith

  3. I have such a hard time reading your posts. I am sure you have a hard time writing them. Though I thank you for doing so. I cry everytime I read them even when they are good posts. My 19 month old stands next to me and rubs my leg if she sees me. I pray all goes well for your little one. I hate when my children are sick and I cannot do anything I can only imagine what you and your family are going through. You are such a strong mama...even when you do not feel like it you are. You are so brave for what you have to endure and what you have to go through as parents. May God Bless you and your family! Love to you all! Ariel

  4. OH Shannon! I am so sorry! I don't know what to say or do. Just that I am thinking of you both!!


  5. Many prayers being said for all of you. Emily is such a fighter and very lucky to have a family that fights right along with her.

  6. Your family is in my prayers. May God give you the strength to face each new day.

  7. I come to you from Cole Foundation FB page. Please know that my family has added you to our prayers.
    Sending lots of prayers and hugs from MA