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, August 30, 2011

September is Childhood Cancer Awareness Month

September is Childhood Cancer Awareness Month, are you aware? Please share this video done by Stormy and Savannah, sharing awareness of children who are fighting or are survivors:

Monday, August 8, 2011

Emily is Going Home

Day +9 - Day +13

Few days since updating again, I normally try to remain busy and at night continue to work as much as I possibly can.  I don't think since we have been here that I have been to bed before 2 AM, because I am either always working or I just can't fall asleep.  

I won't go through each of the days to really update you all, but I will say that with each day that has gone by we can see Emily getting stronger and stronger,.  Each day she is able to do more and more and we can see the strength in her getting more and more stronger and she amazes us to watch her and what she can handle.  

Transplant has been hard in many ways, being away from the family for so long.  Monday will be 21 days and the girls haven't gotten to hang with each other in 2 weeks, not having home cooked meals and just being away from the family is the hardest part. Daddy only being able to see Emily for a little bit each day and the girls not all being together. Transplant was also hard because of the extremely high dose chemo and the side effects and then getting her stems cell back.  While this was all hard, we know that this is something that Emily needs to have done to get better and we know that, but I tell you what... I so wish we didn't have to go through any of this, but we know it is the right thing and we know that Emily is going to make it through this. 

Doctor came in this morning and said that as long as nothing changes with Emily, such as no fevers or any other problems, that she would be able to go home tomorrow (Monday).  He said it would probably be early afternoon, but she would need to go home on TPN, and some of her oral medicines and then of course have to be back in the clinic a couple of times a week.  Emily's counts continue to go up, they were 2.7 tonight, but she still has some pain in the esophagus.  Dr. Gowda indicated that this was normal and it normally takes the longest to go away.Emily really didn't get a lot of sores in her mouth, just a lot of redness, and then the esophagus was the worst which is taking the longest to go away.  So, taking the oral meds makes this even harder on her, because it  still hurts her going down. Was thankful the doctor gave us her prescriptions early so that I could go ahead and call CVS to get them together for us.  Thank you Pharmacist Rick for taking care of these for us.  It will take some time for Emily to continue to grow stronger at home, with her stomach, and eating and just those normal things that many of us take for granted that is so easy to do. We will be cycling (meaning the times of the TPN) the TPN so that Emily will get hungry.... Like the doctor said, since Emily hasn't eaten in so long, it is going to take a lot of time to get her back to where she was with eating and she will be eating very small portions at first and with that in mind her tastes will be very different than what they were before. We have been trying to get her to drink and eat a little bit, but like the nurses said with the TPN and fats that she is currently on, Emily won't feel hungry so eating or drinking while being on these 24/7 will make it harder for her to feel hungry so that is why they will cycle them.   At night she continues to have low grade fevers, 99.5 to 99.9 and they tell us this is from the engrafting of the stem cells, still makes us nervous, for one if she gets a temperature of 100.4 while here, she won't be able to go home and if she gets the temperature of 100.4 while at home, she will have to come back to the peds floor, not the BMT floor.  So, keep thinking of  "NO FEVERS!" so Emily can have some time away before the next Stem Cell Transplant starts.

I want to send out a lot of thanks to so many amazing family, friends and supporters for sending Emily packages, cards to fill her wall, and love that you all have left.   Some of my friends, Melissa and Kira for stopping by to give me some adult interaction and for family, Nanny and Pop and Jessica for coming by to spend time with Emily.  To my friend Amber and her husband Joe, who will make the girls day with a chihuahua puppy when we are ready to pick her up.  (see picture onhttp://www.emilyhubbel.com)  And moreso to my husband Doug for just being the amazing man that he is and doing all the running around and taking care of us and just being so special.  Thanks Doug for bring the girls so that I can spend time with them, while you spend time with Emily and thank you to my girls, Jessie and Brianna for being special girls which I love so much and I am so sorry that we don't get so spend as much time together, but I love you girls so much. Doug is a very special man, husband, and father and I have to tell you all that I am really very blessed to have him in my life and the girls are very special to have him in their life.   I know he can't wait for us to come home and we can't wait to come home.  Sounds funny, but I am ready to return to work and come home and make dinner.   Thank you to my work friends, my Dominion Family for being so amazing and checking on us and sending cards and being so wonderful and lastly, thank you Emily.  Emily, you are my hero, you really are. Actually, Emily is our hero!!! She is one amazing little girl, she really is. For all that she has gone through and still has to go through, she still continues to smile and try to make to us happy, she is still very thankful for everything and loving child and just one of the most caring kids you have ever met.   She loves her sisters through and through, which is just amazing. 

Anyways, continue to send out lots of love and thoughts for Emily as she transitions home to clinic a couple times a week until the next time.  We hope that Emily will be up to a camping weekend come soon but honestly all we care is to all be home together as a family!

Thank you!!!

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.