Friday, June 10, 2011

Emily is home tonight after she was released about 230 pm today! Emily did well today and has done well with this round so far! We are doing 3 nights of home fluids just to make sure all the chemo is out and also to get her fluids in since she doesnt drink all that much! She is happy to be home so happy that she wanted another camping weekend! So we are at yogi bear for the weekend!


Good night and continue to think of her and hope she doesn't land herself back in the hospital with a fever!

Wednesday, June 8, 2011

Emily this morning riding indian style on the  IV Pole.

Its Wednesday night, and we are two days into Chemo and tomorrow at 1230PM, Emily will have only 24 hours left of Chemo of Round 6 and Emily should be released by no later than 3PM on Friday, as long as all goes well.  

Tonight I am laying here with Emily rubbing my arm and watching TV. She had a good day but by 3 pm she said her stomach was hurting. She hadn't had a BM in 2 days so I was thinking maybe it was that.  By 6ish she had her Zofran and a hour and a half later she was eating chicken noodle and then got sick.  I hate watching her get sick, but she seemed to feel better afterward. Jessica and her "friend" Seth came by to visit about the same time Daddy and Brianna got here and it was right before Emily got sick.  Emily had some good laughs with daddy before he left to take take Brianna home to go to bed.

We still hadn't gotten news of what the pathology was from Emily's surgery so when I emailed Dr. Gowda he said he hadn't heard anything, so I emailed Dr. Mattei and he later in the day he replied with the report and also asked how Emily was doing.  That is amazing.  I replied and told him I was very happy that we found him and that we are very happy with what he did and how well he took care of Emily.  I told him the only thing that we regret was not getting a picture of him and Emily together. He even replied to my thanking him and said Thank you for your kind words.  I am honored to be a part of "Team Emily". and to please tell her he said HI!  So, tell me friends and family is that not an amazing man or what?  The pathology report came back showing that the Chemo is doing what it is supposed to do.  The report indicated, "The current specimen, post-chemotherapy, shows maturational changes typical of treated neuroblastoma, with fields of ganglioneuroma, ganglionueroblastoma and neuroblastoma differential."  The only information that Dr. Gowda didn't see was the percentage of what was neuroblastoma and what was ganglio.  So he is going to see if he can get that information.  We are thankful that Dr. Mattei was able to get all of the tumor and Emily was safe and sound and she is doing great today post surgery.  I am anxious to get these post Round 6 scans done to see if she is NED (No evidence of disease), honestly I'm pretty nervous about it but Emily is kicking butt and I know she will be just fine, it is just getting through all of this. Dr. Gowda said this doesn't change the protocol, which we didn't think it would, but that it shows that the chemo is doing exactly what we want it to do.  So, that is positive. Doug and I are confident that Emily will beat this, however I can tell you that I am still nervous about it all!  

Where are we going after Round 6?  Emily has to go through all of her scans, we have a 24 hour urine test, she also has to have her kidney check, EKG, hearing test, bone marrow aspiration and everything else. So she has a busy schedule about 2 weeks after this chemo and our hope is that 4 days after she is finished she doesn't land herself back in the hospital for 9 days like she did before.  And guess what? When Emily is released on Friday, that will be the end of Round 6 and end the Induction Phase of the protocol.  We will then move into the next part of the protocol after the scans and be in the Consolidation part of the Protocol. Consolidation part is where she will do the Stem Cell Transplant which is receiving her own stem cells (autologus) after 5 days of extremely high doses of chemo and that will all be done in the BMT unit of the hospital so it will be a different location and nurses than what we are used to.  So, we are not far from that, but we have a lot going on in the next coming weeks.

Thank you to Child Life for wrapping a present for Emily's birthday and bringing it to Emily. It was really sweet to think of Emily for her birthday even though she wasn't in the hospital.  Thank you so much. Belle the Princess Doll, such a cute doll and she evens sings.  Dad and I told her she will get to meet Belle in Disney World when we go.

Closing out for the night so I can do a little bit more work tonight.Goodnight and make sure you kiss your babies.

Tuesday, June 7, 2011 Part 2

Just a quick update, as I am exhausted from working late last night and then trying to update caringbridge and I would like to work a little bit tonight as well!

Emily really amazes us, because today she has been in an absolutely great mood.  She has been smiling and talking and just having a very good day. At 1010AM this morning they ended up having to give her a bolus (a large dose of fluids over 30 minutes) to get her to potty and see where her specific gravity was.  The last check was at 630 AM and she still was not there.  Emily was awake from 5 to 7 this morning and then fell back to sleep. So by 11AM, Emily woke up saying, "I have to pee!" She finally made her counts and they could get the chemo started, started finally by 1230 after the medicines and all were given.  Not that I really wanted to get them started, but they needed to get started so that she can leave by Friday.  

But if you ask why I say she amazes us is because she always does what we want her to do.  She may give a little fight sometimes, but she always does it.  Today she gave no fight, she took her Life Mel Honey and she did everything else each time she needed to take it for me. We are still using the Traumeel and this round we are trying Glutamin, so we are using both and our hope is that it will cut out those nasty sores she had in Round 4.  I know so many others have gotten them worse and hers were at a minimal, but none at all would even be better.  So we will test how this goes and see what happens.  If they are even more minimal than they were from Round 4, we will be using both during Stem Cell.  Emily had me walking a lot today, many rounds around the 7th floor halls.  Tonight I am feeling it on my foot with the broken toe, but if it makes her happy we will do it.

Daddy came tonight with Brianna and brought Pizza, this is Emily's new fav for the moment, so she was very happy about the pizza from her favorite Whole Foods and enjoyed walking the halls with dad and Brianna tonight.

So far things are going as well as to be expected while we are here, Emily just continues to amaze us as she does so well with what we thought was going to be a really hard time on her.  We can just never tell with her.

Tuesday, June 7, 2011

Update to an update. LOL.

Emily was released within 48 hours of being at CHOP, with the condition that we stayed close until Tuesday,May 30th to make sure all was ok.  Doug went home Saturday to pick up the camper and when he got back into town, Emily was already released and we were ready to go by 5PM.  She was so happy to be leaving and be staying in the camper for a few days.  I have to tell you all that CHOP was an absolutely amazing hospital. It really was, there was so many things that CHOP had that stood outside of the box for Doug and I compared to what we are used to from here.  But mostly, the care that was given to Emily while she was there just above and beyond and they always made sure we had what we needed, and was always there when we needed them.  Dr. Mattei met our expectations and more, he is an amazing man, surgeon and like I said before his compassion was not like most surgeons.  While there we tried to see if we saw any of the others that we had read about, but what was different about CHOP, is that each floor is separated and separated by certain things.  So one floor was Surgery, such as the floor we were on, one was Oncology, but there was other floors as well.  It was awesome place, but we didn't see anyone that we knew by reading.  There was a few that we were on the lookout for, but none that we had seen. 

Children's Hospital of Philly

This is the emergency room.  Emily was on the 4th floor and this was the view in the middle.

This was the Resource center, the library. 

Information board in Emily's room

Like I said Emily was release Saturday night and we headed to the campground to wait things out until Tuesday to be checked.  Emily had a great weekend.  The next day it was amazing, it was the relaxation that we needed and that was to be able to lay in the bed until 2 in the afternoon and never made it outside of the camper until dinner time.  That's right that is what we did.  It was an amazing and relaxing weekend.  

Emily at her birthday at the campground after surgery

Monday was Emily's birthday, she was turning 4 and she was just so excited to be having a birthday.  We were not expecting her to be home because we had expected to still be in the hospital not be back in the camper after 2 days.  Thats right, 2 days. Emily was still in a bit of pain the next couple of days and we went through a container of tylenol after her surgery, but after a few days we noticed it was becoming less and less of that amount of Tylenol that she needed.  But she was doing great.  She  was doing so well that on her Birthday, May 30th (or course we were able to celebrate her birthday) and have her best friend,, Nakeyah there with us. We had cake and ice cream and just enjoyed having Regina, Nakeyah and Tay with us to celebrate Emily's turning 4. Emily is doing great.

Miss Hollywood Emily.  The pink 4wheeler was a birthday present from Nakeyah and Emily just loves it.

After coming home and have a little scare that Emily had bruises around her surgery area and it was a bit swollen, we waited overnight just to make sure that it wasn't anything and also told Emily that she really needed to slow down.  Thankfully telling her that she needed to slow down seemed to help with the swelling and the bruising didn't seem as bad. Things went back to normal for the rest of the week and it had seemed like so long since we had been back at VCU.  

The following weekend, this past weekend, we were having a birthday party for Emily with her friends,, both of her sisters were there.  The hard part was since it is hard to really get to plan things like this with low counts and not knowing when she will have to go in, it is hard to get her friends there.  However, we were able to have a good turnout.  We asked her where she wanted to go and she wanted go to the State Park close to us with the camper and have her friends come there and play on the playset.  Thanks to a great auction, we did get the swing set for the house ordered and we are just waiting for that to come in, so we are excited about that coming in. Nakeyah also came to spend the weekend with Emily and Emily was just so happy to have her there, they re so cute together.  Doug went to pick up Emily Friday evening, while Jessie and Brianna and I got the camper settled in.  It was awesome having nice high counts and Emily being able to have fun and not having to worry about a mask.  It was great.  The birthday party was a lot of fun, Emily enjoyed having one of her friends from school come and a few other people, and it was really a nice turnout for her.  I am really happy that she got to enjoy a beautiful day outside with close friends and family.  THANK YOU all so much for coming out last minute to enjoy the day with Emily, it really meant so much to her.  (She has been telling her nurses that she has had two birthdays, cute). 

Camper all decorated, waiting for friends to come

Happy 4th Birthday

Emily blowing out candles 

So to end the weekend, Nakeyah had to go back home for school, so Daddy had to take her back to meet her mom.  Emily didn't want her to go, she loves Nakeyah, they are so cute. Nakeyah is really good with Emily and she is always watching Emily to make sure she is ok and just enjoying her and they laugh and have fun.  Its cute. I spent some time with Jessie and Brianna while Daddy and Emily were gone and got things ready for the next day, meaning packing for the hospital.  I don't like packing for the hospital and I know Emily doesn't like going.  So, Daddy was trying to prepare her for the next day. 

Emily waiting in the clinic

Emily was admitted today to start Round 6 chemo of the induction phase.  Its a bittersweet that she is almost done with this part of treatment, but also the reminder of what she has went through and what she still has to go through. She has been through so much, but honestly she has taken all of this very well and everyday she shocks her dad and I more and more.  Its amazing how strong she is. We were worried that it was going to be a crying ordeal in the clinic, however Emily was amazing.  I took her to the bathroom and she said, Mommy I am going to be grown up and be a big girl and not cry.  Wow, Emily you go girl.  And she did just that, she didn't cry. Amazing little girl, her daddy and I are just so proud of her.  When we came up to the room, we played with her little friend Bailey for a little while and they rode around the halls on their poles.  I should have taken a picture, but the thought was passed me at the time.  Now  we are just waiting for her urine specific gravity to be ready and get things together for starting.  Its pretty exciting, but also a little bit nervous about what is to come and what it may bring with side effects and things like that. We were hoping that the chemo would have started last night so that she would be heading home on Thursday evening, but her specific gravity is still not where it should be yet.  It is 7 AM and they just checked it a half hour ago and we are still waiting.  In several ways I am not in a hurry, but I hate having to see this horrible stuff go into her body, but at the same time, I want it to hurry so that we can get this over with.  Once this is done we move forward with her scans, all of the scans to see where she is at and then we move into Stem Cell.  Stem Cell is honestly not one we are looking forward to at all.  Thankfully it is her own stem cells, but they still have so much to go through with that.

I want to send out a huge thank you to so many of you, and I tried to explain this to someone yesterday, we truly appreciate everything that you all do for us.  Sometimes I feel like I can't say thank you enough, I really don't, but I try to in all the many ways that I can.  So thank you all so much for just being an amazing community.  You truly find out who you friends and family really are when you go through something like this and I really want to thank those who have just been so amazing to us.  

Don't forget that we have Team Emily Magnets, if anyone wants any.  Great way to support Emily and also a great way to tell everyone about her.  

Well, I am going to end it there, Emily and I were exhausted last night since the night before Brianna thought keeping me up all night was a great idea.  Emily was asleep last night before I even was close and then when I went to update caring bridge I woke up this morning with a million P's on this page.  HAHA.

I am going to post this on http://www.emilyhubbel.com and it will have lots of pictures. Enjoy!