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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Tuesday, March 29, 2011

Tuesday, March 29, 2011

Emily very happy to be camping

Its been a week since our last update and I truly apologize, as life has been very busy! Lots of things going on and just truly busy!  I need to get better as to keeping up with this, but sorry!  As one of those things to keep up with, my previous email Shannonh@couponmommyof3.com, has been canceled because I didn't have the expiration date on my credit card correct to automatically come out and I haven't been able to figure out how to get it to update, and get it back.  So, my email address is shannonhubbel@hotmail.com, so if you have emailed me and I haven't responded, I am truly sorry however I haven't had access to a personal email account in a couple of weeks.

We got home Tuesday evening from Phillyfrom camping and from the hospital and come home to get Doug ready to head to Massachusetts to be with family.  While I knew he needed to be there with family, it was hard for me while he was gone.  I truly love Doug and missed him while he was gone and just during this time even made it a little harder.  Emily too has a hard time because she doesn’t like when we are all not together, she likes us all to be together.  She doesn’t even like when Jessie goes to her dad’s house, because she likes us all together.  So, it is truly one of those things and I also wanted to be there to support family!

This week we had a couple of visits to the clinic for count checks.  We knew her platelets were very low because she literally would just brush by the couch and she would get a bruise on her.  Her legs were just one big bruise, her back had quite a few bruises on them.  We were very careful to make sure that the girls didn’t rough house so she wouldn’t have any problems and to make sure that she didn’t do a lot of jumping and carrying on. So Wednesday when she had a clinic visit, we were there what seemed like forever because she needed to get platelets.   Monday her WBC was .9 and Wednesday her WBC had fallen back to .5.  However we were told this was not unusual with the Cisplatin that she received during Round 3 of Chemo because it has those effects, but the Nulasta shot should have helped with her counts coming up.  Emily has also been complaining of her feet hurting, which caused some concern and the doctor had to come and check.  She did look at her feet but obviously didn’t see anything that made her wonder, and that she knows that tingling hands and feet is one of the side effects of the chemo.  So we were told to bring Emily back on Friday to see how she is doing.  Friday we went back, and it seems like it was a really busy day in the “Fish Bowl”, however Emily got to play with a friend, Eleanor in the “Fish Bowl” to pass time on.  So, it took forever for them to check her counts and to see where her counts were even at.  She is still at .5, which raised some concern that is the Nulasta shot even working for her since the last time she took the Nulasta, it never worked for her either.  So, this may be something that they review after the next round of chemo to see if she needs to get something else.   Today we had another clinic visit to check counts and in hopes to see if it was time for admission for Round 4 of chemo.  Today turned out to be another long day in clinic waiting for counts to come back.  Her WBC did finally move up to 1.2, however her ANC was only .4 and they need it greater than .8 in order to start Round 4. At first they wanted us to come back on Monday for admission for next round, however knowing that next week, (April 8th) is the Fundraiser for Emily (http://www.facebook.com/event.php?eid=128659887203582) and we both have off April 8th to have family coming in and spending time with family and if Emily went in on Monday, she would be coming home Thursday or Friday.  So, we head back Friday to check her counts and if her counts are were they need to be, then they will go ahead and start Round 4 of chemo.

This past week, I also celebrated my  33rd birthday.  The girls sent me some flowers to my work, which was really sweet and they made me some organic brownies, that Emily just had to have as soon as I got home from work.  How cute, right?

We have also really tried to get in as much camping as possible since the girls love camping so much.  Doug asked Emily what she wanted to do for Mommy's birthday and she said she wanted to go camping to Yogi Bear. So, we decided to that together as a family.  Plus it was only about an hour from UVA Hospital, and if we had any problems we would have somewhere to head to. So, when we have time we are camping and Emily is enjoying it and that is what matters.  Spending time together as a family is what matters.  And these days spending time together as a family is only limited to when we are all together at home, so we try to take advantage of that as much as possible.

One of the happy moments is that Emily has not been admitted to the hospital for a fever.  WOO HOO.  We have been very adament about making sure she keeps as germ free as possible and away from all the germs so that she doesn't have to go back for a neutrapenic fever and honestly aside from the many clinic visits, it has been nice not to have to go back for a fever and she have to be admitted for a few days.

This past Friday we also learned that my step-father’s father has cancer in his colon!  I can’t tell you all the sadness that we feel learning of this information along with our current situation and also with Grandma Connie passing. When the information was told to me, I just cried because I really hate what we are already going through and just to add more and for someone else to have to endure this mess, just makes me sick. I cried telling Doug, because its not fair, its not fair that anyone has to deal with this.

Rest in peace Grandma Connie, we will miss you!

We did get a call back from the hospital in Philly and the surgeon who reviewed both CT scans and the Bone Marrow aspirations.  I was able to talk to the surgeon and he felt very comfortable in being able to remove the tumor without a problem.  From what he could see it would probably be at least 4 hours and anywhere from 4 to 7 days for recovery.  He did recommend that we get a CT scan done after the 4th round of chemo, so that we could send off the scans to be reviewed and then be able to set up a tentative date for surgery after the 5th round of chemo.

Emily had a song that was made from Songs of Love Foundation, however gor some reason the information that they sent us to get the song off the website isn't working, so as soon as we get it working, I will post the information here for you all to listen to.  What a great song they wrote for Emily, it has a great beat to it and she loves the song.  I almost thought about posting the words to it, but then once we posted the song, you wouldn't want to visit it and listen to it.

Make sure you check out www.emilyhubbel.com because I have a few more pictures posted there. Thanks for continuing to check in and much love and thanks to all of the wonderful people out there who continue to do an amazing things for us.   Much thanks goes out to the Blackstone Volunteer Fire Department  who held a fundraiser for Emily and did an amazing job for her.  THANK YOU so much.  And thanks to everyone else again for all that you have done for Emily and our family, it really means a lot to us.
The girls and their matching hats.  I have one that matches with it also, but haven't gotten in the picture yet. Cute, right?

Mommy and Emily

Daddy and Emily

We are going to be getting family photos soon, this will be our first family photos that we have had in a very long time, so we are looking forward to that!

Make sure you hold your babies tight and tell them you love them! 


  1. Bryanna felt pain at the bottom of her feet too while going through chemo. It seems to be a common side effect of chemo and the nerves in the body. Big hugs to you all!