Broviac is Out / Port is In / Chemo Is on Hold

This morning I was awake early and couldnt go back to sleep and Doug was awake as well, and then fell asleep. Doug and I talked yesterday after leaving the hospital and the more we sat on it the more we felt like there is more treatment options out there and sitting with no trial but just to try these drugs on Emily and move forward just wasn't what we wanted to see for Emily. So this morning at 545 am I emailed Dr Sholler and explained the results from the MIBG scan we received and what Dr Mosse said. Dr Sholler replied by 853 am when we were bringing Emily to surgery. She explained that the two chemos were a good suggestion although they do have quite a few trials out there that Emily would qualify for. Here comes that word, Sholler has "HOPE" for us. She further explained that they would be happy to see her and see what option would be best for Emily.

Surgery went well today, Doug and I were both nervous about the day. We didn't tell Emily about the upcoming surgery, because her anxiety gets to her and she gets really upset. At 4 years old she understands a lot, but there are just somethings that at 4 years old it is best not to tell her. We were glad that Dr. Mattei was well enough from his previous surgery that he was able to do the broviac removal and place the port in. This port opens more options for Emily as in "quality of life" and more of what she can do, and this is what we feel is best for Emily. After the removal and insert, she would have a bone marrow biospy/aspirate complete to check for disease in her marrow.

Emily did well, she is in pain and her chest is hurting, but she is happy that she can now go swimming. She looked down at her chest and said "mommy my line is gone." I said, "Wow that is great, you can go swimming now!" She was so excited that she said "Yes, and she couldn't wait to tell Daddy that she has a cool line now (no line, but called a port)". We are happy that she is happy with this decision and that she can now do more things. I am sure the first time it is accessed maybe a little bit traumatizing, but I think we can work through it and all will be fine. However, no more dressing changes for Emily which she is excited about and no more nightly flushing. When Dr. Mattei came out and said she was done with the removal and insert, we were happy to hear she was ok and then she was having the bone marrow done. Dr. Mattei did give us a prescription for of tylenol with codeine because he said that she will probably be in pain for a few days. After getting back to the camper today, both Emily and I fell asleep for about 4 hours together. She is laying back down again with Daddy while I write this update tonight.

While waiting for Emily is surgery, we received a call from the social worker at CHOP that she knew that we had some medicine (chemo's and antibiotics) to pick up for Emily, but that the Timidor (temolozide) was not completely covered by our insurance and that it was quite a bit out of pocket. I asked her how much we were talking about and she said $500 per cycle. OUCH. I explained to her that Doug and I are putting these chemos and antibiotics on hold right now until we get a second opinion since CHOP is stating there are not any clinical trials available for Emily right now. While, we still may be coming back to these, right now before we rush into this, we are checking to see what else may be available. I did ask that the social worker to continue to look into this and see if there was something that we could do about the $500 and how they could help should we decide to come back to this. But Emily is stable right now, and we have a little time to see if there is anything else out there that can help, however Doug and I don't like the thought of Emily being off treatment for too long, so we are already moving toward with Sholler and getting what is needed! Being off of treatment for too long, allows for the disease to move forward and this is what we don't want. The social worker said she would email the team, which I then also emailed the team and explained that we want to wait before moving forward and making the wrong decision. As we were walking back from Emily waking up from general anesthesia, we ran into the nurse practioner, so Doug explained to her what we were doing and she understood and felt that it was good idea to get other opinions.

We did reply back to Sholler and would like to have a meeting with her to discuss our options available for Emily. Their social worker is working to get authorization and tomorrow I need to get our Express Scripts (prescription) information to give to them. We don't want to wait to long and want to get this show on the road, so we wait to hear back for the appointment to be made and Sholler will send out a jet to pick us up to get us there. We will continue to keep everyone updated on where we are with things.

Please send us our thoughts and love that we make the right decisions on getting Emily the best possible treatment available. Doug has been doing a lot of reading about the trials that Sholler has sent us that is available, so he is reading into them to see what is best.

Sending our girls at home, Jessie and Brianna, much love and thoughts. We miss you girls. We should be leaving here Saturday sometime, staying her making sure Emily is ok. Make sure you hug and kiss your kids each night and tell them how much you love them. Sending our love to RJ and Joey who lost their fight to NB. We have to find a cure, because this has to stop happening. We will keep fighting to find the cure.

Radiation is Done

I have found that writing these posts, get harder and harder.  I sit down to start to write, and my mind wanders and I go to my email and reply to emails, then come back, I go to facebook and read up on the many of the families that we follow, and then come back.  I do this with a lot of things, but I have found this to be moreso now than ever before.  So, I apologize if my posts ever go random, but its the mind of a cancer mommy and just random things come and go.

The weather has turned and it is cold outside. Our family in Massachussetts even has quite a bit of snow on the ground. Since the weather at night has been pretty cold, we have started using the pellet stove again, and every time Doug says pellets, I am always drawn back to the night when this all started and Emily was laying on the floor in the basement complaining her stomach hurt and we were trying to hurry and bring in a ton of pellets from outside off the trailer so that we could take her to the ER.  Why pellets remind me of this...they just do because that night is forever in mind.  Whats even harder to believe is that we are coming real close to a year of when Emily was diagnosed, 12/23.  

So, as of yesterday Radiation is done.  We are all HAPPY to be done with this part of treatment, because it was a lot on us with the constant back and forth, driving back and forth, and her having to be sedated everyday.  Sedated under the "white stuff" propofol for 12 days is a little much.  Many say this is the easiest part of treatment, and while in some aspects I can see why that is said, however on Doug and I it was still very hard. I think a lot of this had to do with Emily coming off of the propofol and the side effects this had on her.  She had the worse temper tantrums coming down off of this medication and was very moody.  

Emily is now done with the "consolidation" part of treatment and will be moving forward to the "Maintenance" part of treatment.  At this point the scanxiety is in high gear and what will come of the scans.  Since a complete workup has to be done before she can start the Maintenance part of treatment which is antibodies. We really want to hear that the Emily is Cancer Free, so please send out all your love, thoughts and prayers that she is clear.

We leave Sunday to head to Philly and right now it is up in the air of where we will stay.  The feeling of the unknown of where we will be staying is really hard, because the Ronald McDonald House can't guarantee anything until the day off.  You have to call them between 10AM and 12PM to see if they have anything available and if they don't have anything available, you can get a hotel, which in the Philly area are EXPENSIVE.  So, right now we are preparing that we will be taking the camper since, staying at a campground is much cheaper a night should the RMD now have anything available on Sunday and looking and calling campgrounds in the local area. We feel lost not knowing what we are doing and where we are staying.  

Monday and Tuesday are very busy days with appointments and scans, and after talking to Dr. Gowda yesterday he indicated that Emily's complete workup (meaning HMA &VMA, creatinine check for kidneys, hearing and ECHO) should also be done there at CHOP so that Emily will not be all over the place and she have a complete workup in one place. So, just waiting to hear from CHOP to see if those can be next week as well while we are there.  We also have a meeting with Dr. Bagatell to talk in depth about antibodies.  She sent me a 17 page document that talks about side effects, and says that she would like for us to write down all the questions that we have so that we can talk about them during that meeting.  She said this meeting will be a long meeting to talk about how antibodies will work and what to expect and what Emily will be getting. So, it is going to be a busy time while we are there.

At this point that is about all I have as far as an update.  Radiation is done and we are very happy with that.  Emily does have clinic on Friday to make sure that she is set with traveling such a far distance on Sunday, but that is where we are. Oh and something Doug and I are looking forward to, we are going to have some Doug and Shannon time together alone, we haven't had this in a very long time, very long time and we are honestly looking forward to this!

Hug your babies and give them lots of love.

4 Days Down

Thank you Mary Anne, we love them!

Emily has 4 days down behind her of radiation, which means 8 more sessions ahead.  She is honestly doing well with the radiation treatment end of things, however has a very hard time with the "white stuff", the propofol.  She now knows that the "white stuff" puts her to sleep and she really doesn't like that at all.   She also doesn't like the marks and stickers that they have put on her, but we have had to explain to her just like she had ickies in her tummy, she has them in her legs and we need them to be gone. While she accepts this, she doesn't like the fact that they are there.  So far she has not had any side effects from the radiation, and after speaking with the doctor he doesn't think if she has started any yet, she may not have any. However if she does have any side effects, it could be nauseous and soreness. 

The week has been exhausting, just exhausting, getting up early and having radiation for Emily and then working and with 8 more sessions to go, this has not come to an end yet.  Our main goal here is to get rid of the nasty spots and have Emily clear. 

While there isn't much new to report right now, the only thing that we have really noticed is Emily is very irritable, very irritable about anything and everything. While we are not completely sure if the way she is feeling is from radiation or not, we are starting to think it is the accumulation of chemo.  We used to be able to reason with her and talk to her, however we have noticed that doesn't really work anymore, either we just have to get her through it, or just give her a really big hug and hope it calms.

Wanted to send some love to Mary Ann for making some Emily's Journey Bracelets in Emily's favorite colors, they are wonderful and we absolutely love them.  Thank you so much for your kindness. 

Continue to send lots of love, thoughts and prayers as Emily continues treatment.  We are still waiting on a schedule from CHOP as to when Emily needs to be there for scans and when antibodies will start. 

Good night, give your kids lots of love and kisses!

We went to Spirit Halloween and they had bags and bracelets that you could buy and the funds go to VCU Child Life.  We were excited to see for the first time funds to go toward Childhood Cancer, it was really great to see this!

Day +7-9, Stem Cell #2

Today, Mass General had a meeting to review Emily's scans.  We don't know the status of the review, but we do know they were meeting as a team today to review and then next week they will review with a conference what they concluded from those scans.  According to the secretary from Mass General in the Proton area, she indicated we would hear something mid week of next week.  We also understand that MD Anderson will be reviewing Emily's scan early next week, however we have not heard anything from them.  We are anxious to hear the status so that we can move forward and at least know what we are doing.   We are anxious to hear the status because we have heard that Mass General is Top Notch hospital and we have done our research, and then when Dr. Allen Thornton from Hampton University Proton Therapy Institute referred us to them since they would not be ready for children, we knew it was the best place. A friend of mine, Rachel, whose son, Ethan (his caringbridge page),  is currently in remission from Neuroblastoma, thought I ought to check with our health insurance to see if they offer a travel and lodging policy.  She said that theirs did and it was really helpful. All I could do was try and see what would happen. The first woman I spoke to told me she would call me back before the end of the day since she wasn't really sure, and since I didn't hear anything, I called back later and the woman that answered the phone actually laughed at me and asked if I knew I was calling my health insurance provider. Um yes, I am aware that I am calling my health insurance provider. Anyway, I called back again and spoke to another woman who was really nice and indicated that it wasn't something available under our insurance, like I said before it was worth a try to see what they have for people who are undergoing treatment and have to travel.  Radiation is the next part of Emily's journey after stem cell transplant.  She will have to be sedated every day and since she is a child they are normally up first which is thankful because when you have to be sedated, you can't eat after a certain time.

Its been really busy the past few week here with Emily!  Thankfully she has been fever free for almost 2 days now, however the pain has not gone away!    2 days ago, because of the pain, the Hem Onc doctor wanted to get a CT scan of her chest and abdomen.  Per the review of the CT scan, the scan is still 100% gone and only shows calification and shows some haziness in her chest area. The haziness in her chest was of concern for the doctor because she worried it could be the early start of pneumonia.   The CT scan in her abdomen showed she has minor colitis which is causing much of her pain.   Later that evening the pulmonary specialist came in and reviewed her scans and at this time that it was not pneumonia, but that one of Emily's antibiotics were changed to something a bit stronger to help with that and that they would continue to look and make sure she was not getting pneumonia. Thankfully at this time she does not have pneumonia, but the pain in her stomach is still pretty painful.  She screams out in pain.  At night she has been on TPN and while on the TPN she has been throwing up 3-4 times a night which accompanies diarreah most often.  A few of the times she has been throwing up a lot of blood which one of those times she had to get Platelets because she lost so much blood.   The doctor didn't visit yesterday so we didn't get to ask any questions or find out more about the throwing up while on the TPN.  She did come in today and was concerned that Emily still had a lot of pain in her stomach.  She said she was thinking of having them do another x-ray, but that it probably wouldn't be today. She did decide to stop oral medicines for right now because when we gave Emily her dissolvable pill and ursodial, she threw up hard.  Dad was here when she did this and I was downstairs eating, but she screamed out in pain and threw up a lot of blood not too long after.  She doesn't want to do a lot of walking around which is when we are noticing when is crying out more. Another x-ray was done and the x-ray showed a lot of air in her intestine.  Later after the radiologist reviewed the scan and the doctor called the nurses to let us know, everything was cleared up and she only has the air in her intestines and really needs to walk to get that out.  That is great news, yes, but only if we could just get her to walk.  She doesn't want to walk, because it is either she is too tired or her stomach hurts.  The PCA pump is still being used.  Tonight they changed her TPN to start at midnight to see if she still throws up like she has been doing the nights before.  Because Emily has had so much diarrhea she has had potassium transfusions daily. 2 days ago, Emily had to get lasix (which you all know I am not a fan of) but Emily was swollen in her fingers and her face, so to get the fluids out, they had to give her lasix and that night after receiving it she urinated more fluids than fluids she received.  This morning she was pretty swollen and up 2.5 lbs from admission, however throughout the day she seemed to lose those pounds and would not need to receive lasix today. Thank goodness.  

Tonight Emily's counts came back and her White blood count is .5.  Yes, that is right .5.  Hell yea, ready for that nasty mucositis to go away and Emily to come back. I hope that this will take care of her nasty pain in her stomach.  I miss her, I miss seeing her running around and playing. So, lets hope that the nasty stomach pain will go away soon!  Seriously!! This road here has been long and we so thought that Stem Cell #2 was going to be a lot easier, and honestly it really wasn't, in terms of pain for Emily, this was a lot harder.   Monday Brianna will be 2 years old on September 26, hard to believe, but she will be. We are just all ready for us to be home together.  Doug will be celebrating his birthday on October 2nd and Jessie will be celebrating her on October 3rd, so we have a lot of birthdays coming up.  We are looking forward to having one big celebration when Emily gets out that she will be able to take part of. 

I felt like tonight was a repeat of last transplant when we were here.  She was sleeping and woke up and her nose was running (or so she thought and it didn't drip on my arm like it did last time) but her nose was bleeding.  After holding her nose to get it to stop, she then started throwing up a lot of blood.  So, she needed platelets to  help stop the bleeding and will also need a blood transfusion about 6 AM.  Hopefully tomorrow will be a happier and brighter day, and Emily will be feeling better and saying less of her tummy hurting.  This is my hope..  It already almost 3 AM, and I am going to work for part of the day while Dad comes and stays with Emily for a little while. 

This has been a long road, and I swear this road only feels like it gets longer and longer and I don't feel there is a road ending anytime soon, I just keeping looking for that final destination, and we just haven't reached it yet.  Will we ever?  No! .   As of late, I don't feel that my head is all there, and I honestly just feel lost at times and sometimes in the middle of talking, I find myself lost and can't find the simplest words, its like I just can't remember.  I find that I don't remember things that I used to remember so easily.  Doug and I are both feeling like this!  

I want to reach out to all of our supporters, we wouldn't be where we are today without you all.  We read each comment that is left onCaringbridge, Emily's Website and Emily's facebook and each one means something to us.  It is amazing the amount of support that has been out there for us and we wouldn't be where we are today without you all.  We have met some amazing people, organizations and other families going through what we are going through and I am thankful to each of them.  We are thankful to our wonderful families, who are there and they mean so much to us.  Thankful for our community of people from work, mommy's board and just the love from people we don't even know. Thank you for the cards being sent to Emily from all around the world from people we don't even know.  Each card is read.  We will be placing all of these in a very special box so that when she gets older she can read all of these cards and know how many people out there loved her and how many lives she  has touched, because I know it has been many.  We are thankful for the packages of gifts that are sent to Emily, because she gets excited with each of them.  I can't tell you all how much it means to our family.  Emily loves mail and Dad is so excited for when she gets out of the hospital that he will give her a key to the PO Box so that she can open her box and get her mail.  The love that is out there is just amazing, and we thank you all so much all over the world.  !!!

Well, I must head to sleep so that I can wake in the early morning!  Good night!  Continue to leave lots of love and care for our sweet angel.

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Its Childhood Cancer Awareness Month:

The past few weeks I have watched Emily go from running down the halls to laying in the bed. We have wiped the saliva from her mouth because she won't swallow, to changing her clothes & linens 6-7 times a day because of the diarrhea accidents from the chemo, to hearing her cry/scream of the pain she feels in her stomach from the esophagus, to pressing the pain pump to control the pain, watching her throw up blood, bloody noses or others. Emily has had to get blood, platelets, magnesium, potassium, calcium & many other transfusions because of all her body is going through, she hasn't eaten in 8 days. This is the life that we live with Emily and I wouldn't want to be anywhere else, but its hard. Its childhood cancer awareness month, are you aware? If you aren't, do something to make yourself aware, spread the awareness.

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!!!

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.  

Day +4

Someone wrote in the guestbook, it is hard to have the positive (+) day (as in today is Day +4) and things not really be positive.  Today has been a hard day on Emily as well as dad and I.

This morning my supervisor Myles came by to visit, which was really awesome that he came by to check on Emily and I.  I thought I would have been able to go by and work a few days, but Emily has a hard enough time with me even just going downstairs to eat without crying and wanting me to be here.  Myles told Emily's nurse that I work for him and he was visiting since he had a CT scan, and then nurse looked at Myles and said, "Sorry, Shannon won't be at work today!"  Myles thank you for stopping by, it really meant a lot that you stopped by to see us. 

Its been a long day though, from the moment this morning when Emily woke up, she was in pain.  Emily has only been out of the bed today to go to the bathroom or to take 4 baths because she said that the warm water helps her tummy.  Doug and I talked to the doctor about the morphine and she explained it is a very small amount and that we could give it to her when we wanted and it would not be on a schedule.  We were both ok with this and would ask the nurse when we wanted it.  Emily threw up prior to Doug bringing Brianna and she threw up a lot of blood and after the nurse talked to the doctor, the doctor said Emily needed 2 units of platelets and a possibility of nexium to control the acid reflux. They gave her benadryl again to control the rash breakout if it were to happen again. Doug brought Brianna for dinner and when I left Emily she was laying on her side, when I got back she was still on her side.  She had a fever of 102.1.  Got her in the tub for the 4th time today and tried to get it down.  Dad brough a medicine binky which I was able to use and put tylenol in.  Before Emily got into the tub, she was crying out in pain.  Crying isn't the word, she was screaming saying it hurts, help me, it hurts. The nurse was in here and she looked at me and I knew she what she was thinking and I said, go ahead. I cried while Emily was in the tub.  The nurse patted me on the back, but I cried on several levels of seeing her in pain asking for help, "Help me!"  Our 4 year old was saying "Help me!" I mean really cancer, WTF, why do you have to mess with children?  Seriously, I hate you!  I hate cancer and I hate that these kids have to go through hell, hell of chemo and this horrible stuff with the hopes of getting better.  Emily is one hell of a fighter and we know she will get better, but in reality, this sucks, this really sucks.  I know we were told to expect this, I know we were told that this was going to be the worst week, I know this, but seeing it in reality is even harder. She screamed help me and that just tore me up.

Its almost 3AM and the fever is still here, they have added another antibiotic into the regiment of medications that she is taking.  They wanted to give her vancamycin, but because of the redmans that she got twice the last time, they decided to give her daptomycin.  She is also on seraphim, (which is a broad spectrum antibiotic) but because she has a fever, they need to add in something else to cover just in case she has an infection.   We have put ice packs on her, just trying to stable the fever or more really trying to get it to come down.   After the round of morphine wore off, which they give doses every 2 hours if she were on a schedule, it was about 3 hours later and she woke up screaming again saying it hurt.  

They still haven't given her nexium, so I will be talking to the doctor tomorrow because we think it will help her tummy!  But with all the medications that she is on they had to add another IV pump.  Yea, another IV pump.  But many of the medications are not compatible to be mixed with the TPN, so that was part of the other reason.  

Tonight has been a little difficult seeing Emily in pain, missing Doug and the girls and just overall hating cancer and seeing what it does to others and our daughter.  I can't stand that she has to go through this, and hearing her in pain, is unbearable.

Well Emily is still quite warm, so I am going to add in some cool rags to see about getting the temp down.  

Goodnight.

Day 0 - Day +3

Hard to believe I haven't updated since Monday when Emily received her own stem cells back, its been quite busy here both day and night.   I stay up late working and normally during that time, Emily is up with bathroom rounds or what have you!

Thanks Doug for doing all that you are doing with everything else.  It means so much that you bring the girls so I can have dinner with them and that you have been taking care of all the laundry for us with everything else.   I can't tell you how much we miss you, this switching off stuff and not getting to see each other much, is really hard and starting to really take a toll me, I miss you so much. It sucks that we don't get to talk a lot, mostly in passing or by text messages, but I want you to know just how much you mean to Emily and I for taking care of us and makings ure we have everything that we need, while you have other things to do.  It means so much to us.

DAY 0

Emily got a visit from Allison Rippy and her mom on Monday.  Emily loves Allison and she brought Emily a cute, fluffy little dog.  So cute, thanks Allison.  Emily however wasn't feeling that great when they came, so she wasn't very talkative, which I felt kind of bad, but I know that they understand.  Thank you Allison and Astrid for stopping by.

The nurse practioner came in to explain the process and how things were going to go and what was going to happen.  They were going to pre-medicate Emily with Tylenol and Benadryl because it was a possibility that she could break out from the preservative that was used to keep the stem cells.   He also indicated that while they are being transfused and for the next 24 hours, that we may smell something. Everyone says it smells like something different. He said since there was very little preservative in her stem cells she probably wouldn't break out. 

The process started about 140PM, Dad came and Pop was also here. MCV calls this your "birthday" since it is supposed to be special that you are getting your stem cells back.  The nurse that day told Emily it was her birthday and she was kind of confused and then looked at me and said, "Are we going home?"  I felt so bad, so I had to inform the nurse to be careful about what was said, and if she could let the doctors know this as well. Emily's stem cell's were just hung and gravity let them flow in throw her IV.  After the process Doug told Emily she had a stem cell transplant and Emily got upset and he told her it already happened.  After Emily started to break out all over, her legs, arms, behind her ears, back, everywhere. She wasn't really scratchy anywhere except for behind her ears. Since she had already gotten Benadryl, we just need to keep a watch to see if it got worse.  

Dr. Massey did let us know that Emily's Immuno Globulin G was low and that tomorrow she would need to get IVIG and that Emily would also need to start TPN (Total Parenteral Nutrition) after she received the IVIG since she hasn't eaten anything since Friday, but very little.

This was also the day that we really started to notice the difference somewhat.  Emily was having stomach pains, which we were not sure if it was from having loose BM's or if it was from the start of muchositis in her esophagus. They also took some of her stool to do a test of C Diff on it.

DAY +1

The stomach pains have started to set up.  Emily wakes up several times a night to go to the bathroom, whether it be loose BM's or just to go potty.   She also started to complain that it hurt to swallow anything. And when she did swallow anything, you could tell it was painful.

The C Diff that they sent Monday came back negative, but Emily was still having a lot of loose BMs and complaining of stomach pain, so they sent another one to have it tested.

She slept off and on, but and is still having bouts of throwing up.

Tuesday afternoon, the nurse got ready to start the IVIG and had to pre-medicate Emily with benadryl for the IVIG, because she could have side effects from the IVIG.  Recieving the IVIG Emily could experience rashes from it and also feel like she has the flu by being very tired. Doug came about dinner time, so I left for the first time alone to head and pick up Brianna from the sitters and then pick up Jessie from her dad's and have dinner with the girls.  I have to tell you it was really hard to leave Emily, because of all the guiltiness of leaving her, but I knew I needed to, to spend some time with the girls. Its really hard that now that Emily's counts are less than .1 that they can't come in the room.  It was nice to spend some time with the girls to have dinner and head to the Dollar Store for a little while.  I got a text from Doug that Emily was asking for me, so we headed back.   When I got back, she said, "Mommy I missed you so much.!"  Emily really just misses us all being together, we all do, its hard to be away from her sisters and dad and only seeing her sisters possibily in the hallway in passing by and daddy for a little while.  

Emily is asking for home a lot and wants to be home so badly.  When Doug leaves to go home at night, she gets upset because she just wants to be home. 

DAY +2

Wednesday Emily wakes me up out of no where (which that isn't unusual with the going to tbe bathroom) but to throw up. Once we got back to sleep, it seems like no time later the nurse comes in and let me know that Emily's C Diff came back positive.  Which this now puts Emily on contact precautions with a Highlighter Green colored piece of paper on the door indicating contact precautions.  The nights are long with my working at night, but also because Emily wakes up a good amount of times to go to the bathroom and several times she sits there because it hurts so bad. 

Emily has been complaining a lot more of her mouth hurting and she threw up several times this day and each time she had blood in it. Doug had read someone elses time during the stem cell transplant and that they gave their daughter Rincinol.  We are trying this and it seems to work for the mouth to coat the mouth and she doesn't complain.

Doug brought Brianna for dinner Wednesday night and while Brianna and I were eating dinner, Doug texted to let me know that Emily had a temperature of 100.6.  She seemed warm, but I wasn't 100% sure. The drew blood cultures also.

Emily is having more down time now, with not feeling well, sleeping  or going to the bathroom. They did start her on flagile (spelling) for the C Diff.  They want to have 3 negatives in a row for the C Diff to take her off the contact precautions.  They said with C Diff could cause stomach cramping where it hurt pretty bad.

Doug and I are thankful that Soosan, Jesse Grace's mom, prepped us with bringing thick baby wipes, and some diaper ointment for Emily.  we have gone through so many wipes and lots of ointment on her butt because she says it hurts when you wipe. 

This night, Emily's platelet counts were low, but not low enough for a transfusion, however the doctor indicated that if she threw up blood again that they would need to give her platelets.   So she had to get platelets about 10 PM.  Once the platelets were done, Emily starting to break out all over the place turning red where she is scratchy.  She wasn't feeling good at all.  Once the nurse looked at the rash which great quickly all over the place, they had to give her benadryl and then had to test her blood to see if maybe the platelets were infected.Seems like Emily is very bothered by a lot of the stuff that she is getting now, because before she never really had any problems.   After about an hour of getting the benadrul, the rashes were slowly going away.

Emily is still running fevers off and on throughout the night. Emily is doing well and taking things as well as to be expected, however she really isn't feeling as well as she was and is in a lot of pain in her mouth, and tummy. 

DAY +3

Emily was in and out of the bathroom all night and each time she was in the bathroom, she was crying of stomach pain.  We still haven't given her morphine yet because she is still able to sleep through the pain, so it seems that it must be bearable if she is able to sleep.  We are not to keen on the thought of morhphine since so many kids can get addicted to it, and then when it comes time to take them off of it, some kids are having a hard time coming off of it.  

Emily is still having a lot of Loose BM's and Emily's mouth is started to get red and looking beefy.  She pats her chest a lot, which indicates that it hurts in her esophagus.  We hate to see her in pain.  It really sucks.  Emily continued to run temperatures through the day today. Cultures are drawn every 24 hours that she has a fever in. 

Tonight, Doug picked up the girls and brought them both here.  When dad got here, Emily was in the bathroom with tummy pains and we switched off.  I took Emily and Brianna out to dinner tonight away from the hospital, but not far.  Again it was nice to spend some time with them. Thanks honey for bringing the girls. 

Emily ran another fever after the previous 24 hour mark, so they drew cultures tonight.l  So far nothing has come back yet, which is a good thing, so we are going to hope that they continue to stay that way. 

The pain in Emily's mouth has worsened and she is complaining a bit more.  So I spoke to the nurse to see if there was anything else except morphine, she said they have pill form type things, but  Emily wouldn't be able to take any pill types things.  On top of that she still hasn't eaten anything since last Friday.  So, even getting her to take oral meds is hard, because she throws them up. So we will just continue to monitor the pain and see if it keeps her from sleeping.  As it is not almost 4 AM, Emily has been up and down several times crying of pain, I have gotten work done and I extremely exhausted now. However she is now sleeping.  

Thank you so much to all the amazing people out there who have sent Emily beautiful packages and gifts for emily as well as photos to add to her Wall of Cards.  Thank you so much, it really means a lot to us. 

I will try to keep you all up to date more, but like I said it has been pretty busy here and taken care of Emily, I focus more on that than this.  

While I am now having a hard time keeping my eyes open, I really hope that this post makes any sense to you!

Thank you so much for your support.  Thank you for all the love, prayers, thoughts and care for Emily and our family during this time.   We are ready for the process to be over and head home wiht the girls.  

Good Night

Day -1

This will be a quick update tonight, because last night I couldn't sleep well at all, worked a bit and tried to sleep again and sleep didn't come until about 5 AM, so I am beyond exhausted tonight.

This morning, Emily and I were woke up by my mom coming to visit Emily because Emily asked her last night by skype if she would come and she did.  They enjoyed a couple hours together of playing, looking at the weather (Emily's favorite thing to do here as of the past few months) and playing on the iPad.  Dad and Brianna came because we decided since her counts were 1.4 last night, Emily is well on her way of her counts tanking, so we let her see the girls.

Emily had a good day, and actually the lines were taken off (since they needed to be changed, which is done every 3 days) and Emily ran the halls with another little girl who was going home today, YEAH MIREYA. (I hope I spelled that right).  After that she took a nap.

Emily continued to have loose BMs today which she couldn't control and I would need to change her.  She was rather upset that there isn't a sit down tubby here and the nurse said since she is off that chemo she was on, it would be fine if we found something to put there so she could take a bath.  Hopefully we will be able to find a very small ring pool.

Jessica came to visit tonight, which allowed Doug, Brianna and I to leave for a bit and see if we could find a very small ring pool (which we couldn't, looked at 3 places) and to pick up Jessie to come visit Emily for a little since today would be the absolute last day. When we got back, Emily was very tired and was just laying with Jessica.  Thanks Jessica for coming out today!  It was nice to have all of the girls together tonight although it was only for a short time.  

Dr. Gowda didn't see it necessary to start TPN yet, although its been 2.5 days since Emily has eaten. He said we will just take it day by day. She did take a little (like smaller than baby bites) of some ice cream and her organic cupcake.  But nothing too big, at least she tried.  Dr. Gowda also hoped that Emily would remain like she is, we are hoping the same, but I am sure that now that her WBC is at .4 we are going to start to see other symptoms.  We are hoping not, but I am sure that we will.   Most likely mouth sores, but we are hopefully that the Glutamine and traumeel did its work. We did look in her mouth tonight and could see some whiteness on her gums, so it looks as if it maybe starting,m but again hopeful. Emily's hemoglobin was low again tonight, so she needed another transfusion.  (I have to tell you, I hate that she has to get these and I hate that they waste so much blood, because the pharmacy sends so much up and they don't use it all).

Tomorrow is the "Big Day" Emily will be rescued with her own stem cells.  From what I understand the process of receiving your own stem cells is much like receiving platelets and it is normally done in less than half an hour.  They do give her benadryl and tylenol before they do it, just because of the preservative that is in the stem cells that can sometimes cause a reaction.  We have to keep telling Emily that she isn't getting stem cells, because she doesn't want them (She freaks out), from what it seems like to her it is probably a big procedure, which it is just hung and goes through her IV.  

Please continue to hope and pray that the time here is pretty easy and the symptoms don't get worse.  

Emily's Wall of Cards

Thank you to all of you who have sent Emily a card and for keeping her in your thoughts and prayers, we are keeping a wall of all of her cards that she receives so that we can all be reminded of all the wonderful people all over the world that think of our Emily.  We told Emily she is a fan everywhere and everyone thinks about her. Thank you again everyone, it means a lot. 

Good Night, remember to hug and kiss your kids!  

Day -3 and -2

Here we are, its early Sunday morning (wee early in the AM) and it is hard to believe that we have been here 6 almost 7 days.

Day -3

Yesterday Nanny came by and spent some time with Emily, which Emily enjoyed very much.  They played games, did crafts and took a nap together.  Nanny even stayed with Emily so I could step out and have some time with Daddy and Brianna, which was nice, but yet at the same time I felt a little guilty about leaving Emily!  Yesterday overall Emily had a pretty good day, she did get sick a few times.  However yesterday was the first full day that she didn't eat anything at all, because she said she is afraid she is going to throw up.  Tried to get her to eat several times, but to no avail.  She is still swishing which is a good thing, but she stopped taking all of her oral meds because of fear of throwing up.  

Dr. Gowda went ahead and changed everything over that could be changed over to IV, and the only thing that could not be changed over was the oral meds for the liver.  I was able to get her to take it once yesterday.  

We are still leaving the room and taking walks, which is a good thing that she wants to get out of the bed and we are happy for that.

Day -2

Saturday was a good day.  Emily had a great morning, she was in a great mood and just overall playful and very happy!  It was great to see her that way, because the day before was not like that.  We were able to get her to eat 2 peanut butter crackers and a couple of pretzels. She is still swishing.  Later in the day, you could see that is looked like the energy was just swiped right out of her and she was just very down and tired.  She laid down and took a nap and then woke up to spend a little time with Daddy while I took Brianna downstairs to eat.  Its a shame that the cafeteria doesn't really offer more food or other places to eat at. Emily had a few bouts of getting sick and also loose BMs todays which she really gets frustrated with the loose BMs because she can't control it and then her underwear get messy.  I told her that she can't help and mommy will take care of it, we have underwear and daddy has brought you plenty more. 

Day -2 was the last day for her to receive chemo (cytoxan) during Stem Cell Transplant #1.  Like I said Sunday she will have a day of rest, no chemo and then she will be rescued with her own stem cells sometime Monday.  Dr. Gowda said there isn't specific time that it happens, but that normally it is between 12 and 2 pm.  The process is fairly easy, it is just the side effects from the chemo. 

When the night shift comes on each night, they are required to do a CBC and check other things as well!  Tonight we figured Emily would need a blood transfusion since last nights was 7.3. All of her counts are dropping and Emilys White Blood counts are at 1.3 and she is hitting the lows and her hemoglobin was 6.5 which probably accounts for her low energy levels tonight.  So, she is currently getting a blood transfusion right now that has been going on for the last 2 hours.   Emily does well with transfusions not requiring benadryl.   I can't sleep when she needs to get transfusions at night because I need to watch her to make sure nothing changes or she doesn't break out.  She just came in to do another vital check and her temperature was just 99.9.  I am hoping it was just a freak thing and going to go back down. Not ready to start the temperatures yet or having any infections.  Lets hope that this was nothing but just a side effect from the transfusion and will go back down.

Sunday

Day of rest and we hope for it to be a quiet and uneventful day and only Emily wanting to play and be happy!    So far things have been going pretty well and we couldn't ask for anything better.

Send all your love, thoughts and prayers Emily's way!

Just want to tell my husband thank you for being an amazing husband and making sure that we are taken care of here by bringing us clean clothes and whatever else we need.  We love you very much. 

Day -5 and -4

Its Thursday and Emily is currently napping, so I thought I would get a post in. Things are starting to settle in with the chemo.

Day -5

Wednesday wasn't a bad day at all, Emily overall had a pretty good day. Pop came to visit Emily and I for a little while and while he was here the doctor came by.  I talked to the doctor about Emily needing to get Zofran every 6 hours instead of every 8 hours and he was fine with it and was unsure why the overnight doctors had such an issue with it.

They check Emily's weight every morning and this morning it was more than when we arrived and I questioned it and the doctor said it was fluid and if she reaches a certain amount of fluid weight gain that we would have to give her Lasix. (sp), which I also questioned that I understand this could cause hearing loss.  He indicated that the amount Emily would need would not cause it, I don't want Emily to lose anymore hearing than she has.

Monday, Tuesday and Wednesday Emily received Thiotepa over 2 hours and then Wednesday along with the Thiotepa she received Cytoxan.  This chemo will run over the next 4 days, so until Saturday.  

Overall she had a good day yesterday and Daddy brought the girls up again, thanks Dad, Emily is going to miss them.

Yesterday Emily and I were playing in the Playroom with beads and she just started to sing a Justin Bieber song "Down to Earth" without it actually being on.  It was so cute, so I had to record it.  If you want to see it, you can click hereor click below to play. She is proudly wearing her Brooke's Blossoms that Brooke sent to her.

Last night they did a count check Emily's counts are starting to drop, which that isn't unusual, but once she hits rock bottom she will be very immune suppressed, that we have to be careful so that she doesn't get any infections. Her hemoglobin was getting pretty low so we figure it won't be long before she will need a transfusion.  

Emily went to sleep early last night, which she hasn't done in a while because she is always up later and I was able to get some work done and then be with her when she woke up later in the night.

Day -4

This morning Emily slept in and when she did wake up she was very attached to me moreso than normal the past couple of days.  She just seemed very tired and did complain that her stomach hurt.  I got her bacon for breakfast again this morning, but she didn't want anything to eat.  I was able to get her to do her glutamine and swishing, which is important since we really want to minimize the mouth sores as much as we can. Cytoxan started at noon and she got sick.  However afterwards she did eat a little some peanut butter crackers and a little bit of her dinner roll.

They continue to keep an eye on her weight, it did go up again today, but Dr. Gowda said he wasn't concerned.  He said side effects will really start to set in Sunday to Monday.  So not looking forward to that. He also indicated that her HMA/VMA levels had come back and they went up just a bit from the last time we did them after Round 2 (I believe it was)  He indicated this meant there are still some active cells.  Doug and I have a hard time hearing that because from what we read there are so many false negatives with this. 

Today is the last day that Emily's sisters (or kids) can come and visit.  Dr. Gowda said children carry more infections and many times don't know it, and Emily would be safer not putting herself in danger of them coming.  I hope Emily doesn't have a hard time with this, she loves them so much.  I guess there will be a lot of skyping going on.

As for the rest of the evening, we will see how things go. Emily is still napping, her cheeks are red which we noticed, but she didn't have a fever.

Please continue to send your love, thoughts and prayers for Emily that this is an easy process and she goes through this smoothly with no pain and does ok.  Dr. Gowda indicated next week will probably be the worst week and I am not looking forward to it at all, and I know that Doug isn't either.  Its so hard to see them going through this.   Thank you Dad for bringing the girls to see Emily, this means so much to the girls as well as Emily especially, and even me.   We are going to have to figure out some shifting for me to go home in the evening next week to spend some time with the girls, unless Emily is really not feeling well and doesn't want me to leave.  As always we are taking things one day at a time and just trying to make things as easy as possible on her. For a 4 year old, she is such a strong little girl and she just amazes me at her power to do things.  The care partners here who take her vitals are just amazed that she doesn't fight to do anything and easily give them her leg or lifts up her arms to get a temperature.  She is a strong girl and a fighter, she is going to fight this. 

Since I can't post two pictures, make sure you check out on the blog at http://www.emilyhubbel.com, what I am going to post.  Doug met an very caring guy at Meineke, Todd, when he had to take his truck up there a while ago for an inspection and the second time coming back with his truck, Todd saw the magnets on the back of Doug's truck and asked who they were referring to and Doug said my daughter.  While Doug was waiting, Todd pulled up the page and began looking at it and also indicated to Doug some of the stuff that he is going through. It seems it may have been a month or so later when Doug had to take the van up there to get inspected, Todd told Doug that he has half ownership of a race car in South Boston, VA and had it put on the back of that car.  Tell me that isn't awesome.  Spread it about and tell everyone about Emily, she is an amazing girl, oh so strong and just fighting and doesn't even know what she is fighting.  I will post a picture on www.emilyhubbel.com so make sure you check it out.  Todd thank you so much, it really means so much to us that you did that and you think of Emily.  How amazing. So, spread the word tell everyone about Emily, tell them to check out her page.  This week from the 18th through the 24th is International Neuroblastoma Awareness week.

Thanks to everyone for leaving love, thoughts and everything that you do.  Emily will be excited to start getting cards, so again thank you to everyone it means so much to us.  More than you will ever know and it is so hard to express.


Also I try to do small updates on Emily's Journey Facebook, so make sure you like her page so that you can be a part of it.  Tell everyone about the page.