Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

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Saturday, April 16, 2011

Wednesday's Update: April 13, 2011

WEDNESDAY, APRIL 13, 2011 9:22 PM, EDT
Things have been very busy for us....and it all started Thursday evening when Emily went home. She was super happy to go home and be with her family, and wanted to await for family to arrive from Massachussetts! For us having everyone home and happy is what is the best. It was a very crazy time when we got home, because there was so much to do before family arrived. Family arrived and Friday was another busy day. By the way, I got my hair cut at Divas and Dudes on Friday as well and gave 11 inches of my hair to Locks of Love. I would really love to shave it off for St. Baldricks, but being that I work in the Corporate World, I am really not so sure how that would work out, so I decided to give the 11 inches to Locks of Love. Friday we had a lot of running around to do to prepare for the evening and at this point we still hadn't decided on whether or not we were going to take Emily to the fundraiser. By lunch time we had decided it was best to leave Emily home and not have her around all the germs that we couldn't control and thanks to Aunt Lynn we were able to leave the girls home with her. We also had family come in from Baltimore so we had a busy time.

Friday night for the fundraiser came faster than I ever thought it would. Leslie, my coworker, called me early Friday to see if we would be interested in saying something in front of the crowd. We declined mainly because it was a little much for us both and we knew we were both already pretty nervous about the night. So, hopefully we didn't bother anyone by not speaking but it was quite an overwhelming night for us. The night turned out amazing, we seriously want to say this: (I posted this on the fundraising event page)

The Hubbel family wants to thank the amazing response we received from family, dominion family, friends and everyone else who supported us! Doug and I were both very overwhelmed and super nervous about the event, but if was amazing what you all did for us! We are thankful to Leslie for the above and beyond job she did, thankful to family from all over coming to be there, aunt Lynn for keeping the girls at home while doug and I thanked everyone, thankful to VCU for the generous donation, thankful to the Richmond Mommies that stopped by, thankful for the beautiful magnets that were donated to us, thankful to David for taking the photos and just overall thankful! 

This had been very hard on Emily, the family and the support we receive is just amazing of the community out there! THANK YOU 

The turnout was amazing and it did really well, so a huge THANK YOU to everyone, thank you very much. Doug and I decided we made the right decision to leave Emily home, the night was so overwhelming it would have been a bit much to watch the girls and handle the night. As for myself, I don't think I have been that nervous like that in a very long time. What was also nice this was the first night since Emily was born that Doug and I have been out alone without the kids, so it was also nice to enjoy each other for the night and attend to one anothers needs with all that was going on that night. The magnets that were donated were just amazing and I can't tell you how much they were appreciated to Doug and I and to the rest of our family that we can tell everyone about our daughter. So, thank you. I will be coming back to you all soon because we are going to need more magnets and I couldn't imagine going anywhere else to get them, but it is important to us to share her name. I'm not sure if I told you all or not, but the reason why it is so important to share Emily's page is because when all this is said and done, it will turn into an Non Profit Organization where we give back to families in need after Emily is done. So that is what is important to us. So, please share my daughter's page and tell everyone about Emily! 

It was great to spend much needed time with family on Saturday and enjoy everyone's time together.. So I really want to send some love to our family in Massachussetts and Baltimore, thank you all for your love and care and for being there with us. 

Monday Emily had a hearing test and counts check. Hearing test went better than expected and we are very happy with that,. Thank goodness, I don't want us to deal with deafness so we will do what we need to do to make sure she doesn't loose that. Emilys counts, esepcially her white blood counts were .2, which is very low especieclly for the amoutn of time in between. Counts are dropping much more quickier this timewso we will see how this will work.

This is a quick update, but as of right now Emily is back in the hospital. Doug and I brought her Tuesday night because Tuesday she seemed to have a fever off and on all day and giving tylenol once, it should have helped bring the fever down. We are still here and as of right now we dont have an indicted time of when we will go back home. Emily has had a fever off and on for 3 days now which has been unexplained. Yesterday (Wednesday) the doctors came by and said that they found a organism growing on the culture which is also why it could be showing positive! they called it gram positive cocci.

Anyway, I have more to update with, but I'm so exhausted. I will try to get more information out to you all tomorrow, but as for now we are here and from what we can see it doesn't appear that it will be anytime soon. She had a fever of 103 last night at 1145 and had a reaction to the medication that she was prescribed for the bacteria. She got redmans twice! At this point, like I said, we are here and all she wants to do is be home and be with family! I miss my girls and husband and really just want to be home with them also. Thank you Doug for being an amazing husband, and taking care of us while we are here and also taking care of things at home with the girls. 

Good night all! Update you all again soon! Please leave Emily some love and thoughts that she will be going home soon and out of here!!

1 comment:

  1. I'm sending all my thoughts and prayers to Emily and your family. I can't imagine what you're going through but, knowing that reading this makes me cry, I can only fathom how you as the parents are feeling. I will keep you in my thoughts and prayers every day and sending all the love a mother can your way. Stay strong!