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!