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.

Quick Update

Day -6 has ended, and Emily is sleeping and I was able to work some and now I just wanted to give a super quick update as I am exhausted.

Emily complained her stomach hurt and then got sick once around dinner time. This was around the same time that she was getting Zofran. Currently the Zofran is every 8 hours and we had requested it get changed to every 6 hours (this is what we did during Rounds 1 through 6) and the change hasn't been made as of yet. So this will be on our list to talk to the doctor about when he comes in today.

Emily has been very about mommy while we are here. Prior to this starting she was all a daddy's girl and once this started, she wanted me here, and would get upset if we asked her if daddy could stay the night here. The past couple of nights when I lay down with her she would rub my arm and keep saying mommy I love you, Mommy I love you. She is such a sweet little girl, don't understand why she has to endure this, but dad and I both know we are doing the right thing. I did see if I was able to sleep with her because Emily wouldn't take that very well and Dr. Gowda gave me the permission to do so (and said other parents do this as well). Tonight I got a cot put into the room so that I could do my work on the cot and update caringbridge and she got very upset thinking that I was not going to be sleeping with her and I reassured her I was going to be sleeping with her.

The girls were able to visit for a little bit today, which was great to see them and Emily definitly enjoyed seeing them. Jessie, Emily ad Brianna are all amazing kids and we hate that Emily has to go through this, but also that their sisters have to go through it in a different aspect. This hospital stay of course if very different from others, but since after Thursday the girls will not be able to visit, I will be leaving in the evening when dad comes up and spending time with the girls and then coming back to stay with Emily. I won't leave this week while Emily is getting chemo, very particular about it and watching what is going on.

Tonight we received a visit from very nice young lady, by the name of Erin, whom we had never met until tonight, and she knows a good friend of mine that I used to work with through my previous job. She came by and brought a big smile to Emily with some lights to decorate the room (and Emily was excited because they looked like camping lights) and a arts and craft box that was beautiful decorated. Erin thank you so much to you and Roger for your kindness, it really means a lot to us.

Tomorrow about 1130, Emily has the teacher coming to visit and do some work with her, hopefully Emily will feel up to it.

Again just a quick update, for the finish of Day -6, I will try to do a better job at updating everyone daily to let you know how Emily. Thank you again for all of your thoughts and prayers, they mean so much to us.

Day -6

Sunday night, Dad and I didn't sleep well at all just knowing what the coming days are going to be like and what we have to put our daughter through.  It really sucks to bring a happy girl who just had an awesome past 2 weeks away from the hospital and having to bring her here and just bring her down all over again.  My thoughts are F Cancer.  Sorry, but it is what I think!  One of our friends son, Wilson, who also had NB and he is NED and finished with his line out (yeah) she made him a shirt that says F Cancer so whenever he comes to the hospital he was wearing it.  Love the idea.

Monday morning came all to fast for us to have to bring her to the hospital. Seriously never thought we would be staying at the hospital for more than the 12 days (like we did at the very beginning) so starting the day knowing 3 to 4 weeks, oh just breaks my heart knowing what she will have to endure. Day -7 went well though, the only major break down was when Emily had to take a shower (on command) and a dressing change.  Taking a shower is not something she has done since she had had her hickman line, so she is always very careful not to get it wet (which also means no swimming or anything of that sort). Once the shower was done, she calmed down and was fine.  Basically there is a lot of swishing that she has to do besides the normal swishing she has done during chemo before and meds that she has to take on a daily basis to help with many different things.  So far she has taken them all without help and done the swishing along with the glutamine that we also do.  Our hope is that she continues while the chemo continues this week.  

She finished with Day 2 chemo for today and will start again tomorrow at 10 AM.  The chemo she is getting the first 3 days is the chemo that she has to have 2 showers a day and 2 dressing changes after the shower with bedding changed as well because when she sweats the chemo comes and can sit on her skin.  So, they give me a special antibacterial wash to clean her with in the shower.  After tomorrow she will be done to 1 shower a day and tomorrow she will start the next type of chemo.  Saturday she will be done with the chemo and will have a day of rest and on the 7th day, as they call it, Day 0 she will have her stem cells given back to her.  This process I understand is rather quick.

The hard part is that I can't shower in here, use her bathroom and after Thursday Emily will not be able to have her sisters visit because her counts will drop seriously and cause for infection is very serious during this time. Dr.  Gowda indicated no children should visit after Thursday, so the girls came by today and will come again Wednesday and Thursday and after that will be skyping so Emily can see her sisters. 

Today's shower wasn't so bad because Emily knew what she needed to do.  She did great and I was so so proud of her.  Her dad and I are so so proud of her.  She is such a strong baby girl.  We love her so much. 

Thank you everyone for your special prayers, thoughts, love and Jesse Grace's Uncle who works here at VCU for stopping by and bringing Emily a gift.  Thank you all so much for all you do.  

Again, Many have been asking where they can send things to Emily while she is here at VCU Medical Center.  Emily loves to receive mail and gets so excited when she gets something. Emily and I started a card wall for her today, so everything she receives a card we will place them on the wall. The snail mail address for Emily while she is here for the next 3 to 4 weeks, here is the full address:

Here is the complete address at the hospital: 
North Hospital, 10th floor 

Patient: Emily Hubbel                                                
1300 East Marshall Street / P.O. Box 980157

Richmond, VA 23298-0157

Thank you all so much!!!

Snail Mail Address While Emily's in the Hospital

Many have been asking where they can send things to Emily while she is here at VCU Medical Center.  Emily loves to receive mail and gets so excited when she gets something. The snail mail address for Emily while she is here for the next 3 to 4 weeks, here is the full address:

Here is the complete address at the hospital: 
North Hospital, 10th floor 

Patient: Emily Hubbel                                                                                                          

1300 East Marshall Street / P.O. Box 980157

Richmond, VA 23298-0157

Day -7

Its been since our trip since I have written anything here, so I must apologize for the late update.  I have been wanting to update, but just haven't done it.

First I must say that our trip to Florida was absolutely amazing and the girls had a great time.  I will share some pictures with you all on Emily Hubbel's Webpage.  The Make a Wish Foundation does an amazing job with making sure these kids get their wishes and the Give Kids the World Village in Florida, was something that you just never experience and it was beyond amazing.  Emily didn't want to leave the village, she was just so happy there and it was great to see her that way, it really was.  This was something she needed and I think we all needed.  It was firsts for the girls and I to ride in a limo and take an airplane, however it was all stuff that Doug had done before.  The girls did great on the airplane though, much better than both Doug and I thought they were going to do. 

We knew when we got back that things were going to move quickly and it would be back to reality, and boy was it.  We got back early, very early Wednesday morning and had no hospital visits.  Doug and Brianna both came back from Florida sick, so we were concerned that Emily would get sick too and this would not be good during extremely high dose chemo and infections.  So, we let Dr. Gowda know and he put her on an antibiotic.  Thursday it was back to the hospital for hearing tests and ECHO to see what the last 6 rounds of chemo may have or may not have done to both.  Emily has lost high frequency hearing in both ears, but they didn't feel it was anything to be concerned about right now, but that they would keep an eye on it and that as of it right now it does not mean she needs a speech therapist or anything like that.  So, our hope is that it stays that way and with the stem cell transplants coming up she will not have any other hearing problems.  The ECHO looked great and they didn't see any concerns at all with that.  Thursday we also took a tour of the unit of where Emily would be staying for the next 3 to 4 weeks during stem cell.

Friday was another day back at the hospital to meet with Dr. Gowda and go over everything (all the scans and tests) together and then sign the papers to get the randomization done to see if Emily would be in for 1 or 2 stem cell transplants through the COG study.  Prior to him doing it, we knew she would get one, it was just our gut feeling that that is what would happen.  Dr. Gowda said he feels that 2 is better than 1 and from what we have read 2 is better than 1 if they are not NED yet, which Emily is not. When he came back, he said that Emily was randomized for 1.   At that point we decided to get out of the study so that Emily could have 2 stem cell transplants because with her age and not being NED yet, we felt it was better for her in the long run to get two.  Getting out of the transplant was not any problems and would not be for the future either.  Emily had already been approved through insurance for 2 stem cell transplants.  Honestly the way Doug and I look at it, we are in this for Emily and her care and what we think is best or her.  

This weekend flew by meaning that tomorrow at 9AM would come quickly and already it is 235 AM, and she needs to be there at 9 like I said.  Doug and I are both beyond nervous and just want to make sure that Emily will be safe and sound and we take care of her to the best of our ability.  We have been preparing by getting things together and getting all that she needs for her bags. Our we ready mentally, HELL NO.  Honest our thoughts are, "FIts been since our trip since I have written anything here, so I must apologize for the late update.  I have been wanting to update, but just haven't done it.

First I must say that our trip to Florida was absolutely amazing and the girls had a great time.  I will share some pictures with you all on Emily Hubbel's Webpage.  The Make a Wish Foundation does an amazing job with making sure these kids get their wishes and the Give Kids the World Village in Florida, was something that you just never experience and it was beyond amazing.  Emily didn't want to leave the village, she was just so happy there and it was great to see her that way, it really was.  This was something she needed and I think we all needed.  It was firsts for the girls and I to ride in a limo and take an airplane, however it was all stuff that Doug had done before.  The girls did great on the airplane though, much better than both Doug and I thought they were going to do. 

We knew when we got back that things were going to move quickly and it would be back to reality, and boy was it.  We got back early, very early Wednesday morning and had no hospital visits.  Doug and Brianna both came back from Florida sick, so we were concerned that Emily would get sick too and this would not be good during extremely high dose chemo and infections.  So, we let Dr. Gowda know and he put her on an antibiotic.  Thursday it was back to the hospital for hearing tests and ECHO to see what the last 6 rounds of chemo may have or may not have done to both.  Emily has lost high frequency hearing in both ears, but they didn't feel it was anything to be concerned about right now, but that they would keep an eye on it and that as of it right now it does not mean she needs a speech therapist or anything like that.  So, our hope is that it stays that way and with the stem cell transplants coming up she will not have any other hearing problems.  The ECHO looked great and they didn't see any concerns at all with that.  Thursday we also took a tour of the unit of where Emily would be staying for the next 3 to 4 weeks during stem cell.

Friday was another day back at the hospital to meet with Dr. Gowda and go over everything (all the scans and tests) together and then sign the papers to get the randomization done to see if Emily would be in for 1 or 2 stem cell transplants through the COG study.  Prior to him doing it, we knew she would get one, it was just our gut feeling that that is what would happen.  Dr. Gowda said he feels that 2 is better than 1 and from what we have read 2 is better than 1 if they are not NED yet, which Emily is not. When he came back, he said that Emily was randomized for 1.   At that point we decided to get out of the study so that Emily could have 2 stem cell transplants because with her age and not being NED yet, we felt it was better for her in the long run to get two.  Getting out of the transplant was not any problems

There are some amazing people out there.  Thanks Grandpa Hubbel for the van, it really helps out.  Thank you Connor's Heroes for all that you have done for our family, it really means a lot.  Thank you Give Kids the World and Make a Wish Foundation, you are awesome.  And thank you everyone else for all that you do for us, I can't tell you all how much it means to us.  THANK YOU

Tomorrow starts Day -7 and on Day 0 Emily will receive her stem cells. This is a pretty serious process and we are very nervous about the process.  Some of the chemo that she will be on will cause her to need to take 3 tubs a day to get off the sweat that she may or may not have. I will not be able to take showers or use her bathroom, so I will have to use other sources. I was also told I can't sleep in the bed with her, OH WOW, not sure how she is going to take that way.  We are not ready, we are both super nervous and scared of what is to come and can come.  

Thank you so much again for all.  Please know know it all means so much to us.   Today we take Emily in for stem cell, Day -7, and we are both extremely nervous of the "what ifs" and everything else.  I have not updated EmilyHubbel.com with photo's yet, but I intend to do so!   I hope to update as things go!

 

Happy July 4th!!

The girls having fun!!

Happy July 4th to all! We are enjoying family time and watching the girls laugh!

Starting to pack for Disney! The girls are excited!

Hope you all have a great day!

Emily and Brianna getting ready to go down the slide!

Emily and Jessie swinging

All the Scans are Back

Well all the scans are finally back and we are moving forward to stem cell transplant on July 18th, we are so happy to know that Emily is moving forward..  Emily did great on all of her scans, she was so strong and did such an awesome job.  Doug and I have watched her grow up so fast in this last 6 months and it is just amazing how strong she has become over all this stuff that she has to go through.  

The bone scan that she had last week came back with a preliminary negative but we heard on Friday it was positive showing the spots on her legs.  It continues to show the spot on her skull, but again when we had these reviewed back at CHOP they did not find any concern with that spot and wouldn't have noted it.  We also heard that the BONE MARROW IS CLEAN!!!!  This is awesome and we are very happy to hear this.  We honestly thought Dr Gowda was holding onto this until we got back from Disney World because he found something in it.  And of course when he told me it was clean, my first question was now it won't come back next week as positive showing anything will it?  He said that is why he waited so long to let us know because he didn't want to give false hope.   We are both really happy about this and our main concern will be to focus on the 4 spots on Emily's legs. 

Wednesday morning, we are all being picked up by the Love Limo and heading to the airport.  It doesn't seem real like it isn't going to happen, but we are all very excited.  Emily tells everyone where we are going.  

Doug and I made a promise to each other to not talk about all this stuff until we have to come back to it. He is right, we need to enjoy the family, each other and just have fun and lay back and watch the girls with huge smiles on their faces to make us smile.  I love seeing them happy. 

Thats really all I have to update with as of right now.  Make sure you are following Emily's Journey on Facebook because I do update with small updates there when I can.  Next week I will try to post a few pictures of the girls, as they are all excited about heading to Disney World. 

Thank you again for everyone's love and support and all the prayers for everything for Emily, it means so much!

Have a great, safe, holiday weekend.  ENJOY!