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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Wednesday, August 3, 2011

Day +5 - Day +8

Emily in ice packs during one of her high temperature moments

Its been a few days again since I have written, you would think with my not sleeping really good at night, that I would be able to write more often, but I do like to work as much as I can at night and then normally the rest of the time Emily is pretty restless at night time so I am taking care of her.  Last night was a pretty long night that I wish I could say was eventless, but it was not.

DAY +5
Fevers continue to happen.  This day Emily happen to be very annoyed with everyone and didn't want anyone to touch her, look at here or mess with her.  The doctors come in and Emily pulls the sheets over her head because she doesn't want to talk to them.  That isn't unusual that she doesn't want to talk to them, but she has just had enough of people being in and out of here. 

Emily still was having a lot of loose stools and going through underwear like crazy.  Thank you so much Doug for keeping up with our clothes while we are here and that Emily always has clean clothes and underwear.  

Today Emily threw up a bunch of blood and because of the amount of blood she threw up, she had to get platelets again. After a little while later, Emily spiked another fever and we were unable to get her to take Tylenol and without taking Tylenol, I was left with putting ice bags all around her. It went down, to only spike again.  The nurse finally got it approved wee early Sunday morning that if Emily spiked a fever over 101.5 that they could give her IV Tylenol.  Yes, IV Tylenol can you believe it, according to the doctors it was just approved in the US about a month ago and VCU Medical Center has it.  How awesome is that for patients like Emily who won't take anything oral. Since Emily spiked early in the AM, they had to do blood cultures and when last checked CBC her hemoglobin was 7.4 so they were going to have to give her a blood transfusion first thing in the morning.

Doug visited for dinner this night and Brianna and I were downstairs eating, Emily was not in the mood for anyone and Doug said she even told him, "Leave me alone"  so while finishing up eating Emily wanted me to come back.  As Doug was leaving Saturday night, I cried.  I miss all of the family together.

Something else they are trying to see if will help with her throwing up and the acid reflux is nexium, she will get this once a day early in the morning.  

DAY +6
Today Emily had to get a blood transfusion and during the transfusion she spiked a fever, where she had to stop the transfusion, get some IV Tylenol and also put a cooling blanket on the bed to keep Emily's temperature down.

All Sunday Emily complained of a lot of pain in her mouth and also in her stomach.  The mouth pain has become so apparent now and painful that she won't even swallow her own saliva and holds a washrag to her mouth to catch the saliva.  Sunday morning we woke up to a soaking wet pillow case from all of the saliva that she didn't swallow.  Dad was able to get her to swish and spit with Rincinol once.

Dad brought Jessie and Emily up and I took them out to dinner which was nice.  We actually left the premises and went to Chili's with a lovely gift Card from Kids Cancer Crusades, thank you so much.  It was nice to get away from the same ol food that they have here at the hospital and nice to be with the girls.  While we were gone he was able to get Emily to take a walk down the hallway after going to the bathroom. 

When I got back Dad and I decided that to keep up with Emily's pain we would have them have the PCA pump attached to her line where all we would need to do is press the button and wouldn't have to wait for them to bring it and for it to get in the line.  I don't think Doug and I ever thought we would have to go that route, but the way the nurse explained it to us, it will take longer for Emily to recover when she is in pain because her body will remain exhausted and can't heal. It made sense, it just sucks to see your child have to go on a pain med because of chemo because of stupid cancer.  Yeah, I said it, stupid cancer.

Emily finally got the pain pump attached after 1AM but needed morphine before that.  Also checked her temperature and Emily was 102 again.  Blood cultures again since they have to be done every 24 hours.  Amazing.  I tend to think about prior cancer, prior chemo when any of the girls had fevers, it was never a big deal.  Now it is a big deal and it sucks.  So far all of the cultures have come back negative, thank goodness, but still a fever during transplant makes it even worrysome.

Jessica thank you for coming by to visit today.  I don't have a lot of interaction with adults at the time since Doug and I are always in passing, so it was nice to have some adult interaction and you coming to visit Emily.

Again thanks Doug for all you are doing for us, you are an amazing husband and I am so proud of you.   

DAY +7
Emilys and mine sleep schedule is really messed up.  We are up till late in the night and sleep almost half the day.  I think the care partners get annoyed because they have "protocols" that they seem to think that they have to follow to a "T" with the times and all and will come in at 7AM in the morning to check Emily's weight since they do this twice a day and get frustrated when we are still asleep.  I think the most frustrating thing about the BMT unit here is that it is on the adult floor, there isn't a BMT unit for Children, so because the nurses are so used to how adults should be treated, and cared for, they believe that Children should be treated in that same manner as well as family and family members.  

Today we got Emily's HMA/VMA levels back from when she had them done earlier in the week.  She actually had them down (through urine) right before she was admitted and we received them during the first week Emily was here.  The levels had gone up from the last time they were check.  These levels are checked, but according tot the doctor they do not go by these, they only use these as an indicator of the active neuroblastoma cells.  It is just a "Marker" they say.  We previously did a lot of reading on these, because of the numbers that have come back and we read that they cause a lot of false/positive.  Each time Emily's numbers have gone down, and this one went up.  We asked if it could be contributed to food that she ate (since we ate a lot of junk while in FL, that we don't eat) and were told that it shouldn't have en effect.  So since Emily wasn't eating, we asked that they be checked again, because they would be more appropriate now.  The levels came back today and were done, so we realize that the ones done on July 15 were off from the food she had eaten.  Crazy.  But happy to know they are going down.

Emily is still on contact precautions because of the C diff, we were told that she has to have 3 negatives of C Diff  and then she could be taken off of Contact Precautions and the last one they sent in was Sunday and it came back today Negative.  So, yea we have 2 more to go.  Contact precautions means all the nurses, care partners and doctores are supposed to come in with gloves and suited up with the with blue plastic chemo gear (what it looks like to me).  They gave us something to wear around the room, but was told if we didn't wear it that we would just need to be extra precautious.  The doctor told them (the nurses) we were not one to worry about spreading germs, we were the least people to worry about.  Do you think she was calling us Anal?  Haha....

Emily spiked another fever tonight, however it was less than 24 hours so no cultures needed to be done.  Whenever they do cultures, it tends to take a lot of blood from them, so I hate that they have to be done, but it makes sense why they need to be. 

For 8 days Emily sat at less than .1 WBC, tonight the results finally came back that her WBC was .1.  I let Doug know by text we were excited, but also at the same time we remember this happening before and then the next day they were back at less than .1.  So not time to party yet.  She is still in a lot of pain in her esophagus and mouth, so the pain pump has definitly helped and she doesn't use near as much as them just bringing a syringe to place in the pump, which is even better. 

DAY +8
Yesterday was a new day and we were starting to think that Emily was coming around.  We were having less signs of pain and more of her being awake.  Heck yea, we can take that, because that means less having to press the pain pump.  Was able to get Emily to take a few walks outside of the room and when Dad came to visit for Dinner tonight while I was eating with Brianna downstairs, he was able to get Emily to play on the WII.  This was a first, since she hasn't felt up to doing anything at all the past 5 days.  Normally when Dad is here for dinner, I take Brianna for long walks around the hospital in hopes of making her tired so she will go to sleep easily for Doug at home, but also to give Doug some time with Emily.  Well, Brianna needed a diaper change and I was coming to get the keys from Doug last night and he said Emily just threw up blood, and wanted me to stay with her, he was going to go ahead and head home.   We knew she was going to have to get platelets.

Jessica made a surprise visit late last night and brought ber crackle finger nail polish and painted her nails.  Prior to Jessica getting her, Emily's throat was hurting from throwing up, so she had pressed the pain pump so she was a a little tired when Jessica got here, but nonetheless was happy to see her.  Thank you!

Emily counts...she is starting to engraft.  WOOT.  Her WBC is at .2 tonight.  The nurse said we are not out of the water yet, which we knew...but still happy to see something other than less than .1 and it didn't go back down.  Emily's hemoglobin was 8.5, which we were thinking that it was going to go down from the day before, but it went up, so that was also exciting to see.

The nurse let me know since she had to give some of her meds, she was going to do that first and then give her platelets, which seemed fined to me.  I had starting working early last night so that I could go to sleep earlier last night because I was tired and Emily was laying on my arm while i was working.  She had started to sniffle and I asked her if she was getting sick and she shook her head and then I felt something drip on my arm.  I looked down at my arm and realized Emily's nose was bleeding.  So, I got up and immediately put pressure on her nose to get it to stop and called the nurse in.  The nurse came in and she immediately wanted us to put Emily's head back.  I said, "Ma'am, I was told for bloody noses, you should never place their head back because because the blood will gather in the back of the mouth and they could throw it up or even worse choke.  So I sat and held it and she immediately stopped the meds that were going and got the benadryl going and Tylenol for the platelets.   Then Emily decided to scare the crap out of Mommy.  The blood in her throat she started to gag on it, and then she threw up.  She was screaming in pain which of course made the runny bloody nose worse.   She threw up and she threw up a lot of blood, so much it scared me.  it scared the crap out of me.  I called Doug and woke him up to let him know what was going on.  But Emily threw up 40 CCs of blood and it scared me.  No parent wants to see blood, but a cancer parent whose counts are already suppressed as it is, makes it even worse.  Of course all the blood she lost worried me even though her hemoglobin was 8.5.  This situation lasted a good 50 minutes, and during this time I think the PCA pump was pressed every 10 minutes because of the amount of pain that Emily was in and then you could see that the benadryl and morphine was setting in because she finally started to calm down and the runny bloody nose stopped.  Thank goodness because it scared mommy.  The lady told me that the platelets were here and they were started and she was getting another 2 unitis.  She also indicated once they were done they would do a post platelet check.  While I know they are not supposed to do this on peds, I was concerned about her platelets count and hemoglobin, so I didn't say anything and asked to make sure that they check her hemoglobin.   Thankfully she did because from the amount of blood that Emily lost, her hemoglobin dropped to 7.0 and Emily would need another blood transfusion.   

After this episode, I of course was happy to see her settled and at peace even if she was asleep from the morphine and benadryl.  She scared the crap out of me from throwing up all that blood last night, that it really worried me.   I was able to get my work done after this and then head on to sleep as they were starting the blood transfusion.  Since she was still on the benadryl I didn't worry as much of her breaking out from anything and was able to calm myself to sleep, I needed it.  

While engraftment has started, YEAH, we are still trying to get rid of the pain in her mouth and esophagus.  It is unbelievable the pain that she is feeling, but as soon as her WBC come up to at least 1.0 or so, the pain in her mouth should start to subside.   She did have another bout of loose stool which was sent off to get tested, we should know tomorrow what the results of that are.

today is the start of Day 9, I am still pretty exhausted, but I thought since Emily was still sleeping, I would go ahead and update and let you all know what was going on and then I am going to try to fall asleep for a little while before she wakes again.  Please hope for an uneventful Day +9 and that Emily's counts continue to rise and that she doesn't have as much pain today. She did wake up about 7 AM trying to pick her nose because of the dried blood which I had to stop her because if she picks her nose, she could start a nose bleed again and complaining of chest pain which the nurse indicated she may feel for the next day because she probably still has blood in her mouth or back of her throat.  I tried to get her to swish and spit with water, but she wouldn't do it.  Again, lets hope for a quiet and uneventful day and everything starts to subside and hope for home more earlier rather than sooner.

Daddy, Emily and I miss you and the girls a lot and we thank you for all that you are doing with running them here to us for dinner, it means to much.  Thank you for keeping up with our clothes and thank you for keeping up everything at home, along with everything else.  I love you so much. Also thank you to all of the amazing community out there who continue to show us support by sending Emily cards and packages.  Emily's wall is full of cards and a room full of packages from all of the amazing people out there.  I want to thank each of you for all that you do, it means so much to us.

Well, off to try to sleep for a little longer.  


  1. As I read, my heart breaks because I went through this 2 years ago with my daughter, so I know what it feels like. Now, we are in the process of going for a 2nd bone marrow transplant. Keep faith and stay strong! My prayers are with Emily & her family!

  2. I say many prayers a day for you Emily. I am so, so sorry sweet little girl that you have to go through this. I pray for God to make it stop, you deserve better than this. Screw You CANCER!!!

  3. Bless you as mommy. I could not imagine going through this. May God bless you and keep you while you are going through this journey.

  4. It seems unbearable. You are a strong woman. (((Hugs)))

  5. Oh Shannon...continuing to keep you in my thoughts and prayers every second. You are an amazing mommy and woman. No one should EVER have to go through this.

  6. It breaks my heart I cant be there for you Shannon!!! But I think of you all the time, Both of you! You both are a very important to me!!!


  7. Ma'am,

    I'm the father of a young child who received a liver transplant at 20 months. Reading your stories touched me deeply and brought back many memories of similar trials with transfusions, pouring over the 2x daily lab reports, and the frustration of having to administer medications that were so toxic I wasn't even allowed to touch them with my bare hands.

    He's recovered now and is a vibrant and loving three year old who is sporting some amazing scar tissue as a badge of courage on his torso.

    I can't claim to know what's in store for your child, but as a parent who had reached the point of complete despair, I'd like to offer you a little bit of hope. I had lost my hope as a result of watching my child's defenses stripped away and his body shut down to simple life support. I wish I knew then what I know now which us simply this: Healing can be very painful, It can have some pretty significant setbacks, and it is not a simple journey. Despite that, it IS still healing. I believe your daughter is getting better and will soon be ready to leave that hospital room again. Good luck, stay strong, and know that you are not alone in your experiences. This will not last forever and things will get better.