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!