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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Friday, May 6, 2011

Thursday, May 5, 2011

Emily on the Monday night after realizing she has to be here!

So I thought I was going to update last night the last few nights, but just didn't.

Monday evening Emily should have started her 5th round of chemo, wow....5th.  Scary that I am talking about what toxic chemicals my daughter should be receiving.   However she wasn't able to start because her urine specific gravity hadn't quite made it to its levels to start.  So, overnight she just received fluids to get her specific gravity to where it needed to be.  

Monday afternoon, I was able to meet Lisa from Connor's Heroes.  Emily was passed out asleep when she got here from the benedryl. She is such an amazing woman and I appreciate all that you do for the families in Richmond.  Emily really enjoyed the gifts that you left for her. Again such a pleasure to meet you!  She also has this program called Sidekicks (or you might know it as Big Brothers, Big Sisters) that we can sign the girls up for.  I would definitly like to get someone for Emily, because I think it would really help and maybe someone for Jessie.  
Once Emily woke up, she was in a much better mood (see picture on http://www.emilyhubbel.com) and she said to daddy and I, I flipped out earlier, huh? 
Well Tuesday morning, Emily's urine specific gravity was finally where it needed to be and she was ready to start chemo.  ACK!

Today was the 3rd day of Round 5...  This round was just like Round 3 and honestly so far, it hasn't been as bad as it was during Round 3.  Emily has been handling it well, which we are very happy about and still eating. Something different we tried this time as well is some aromatherapy (ginger mint, peppermint lotions, and ginger oils) and they really seem to be helping.  Earlier tonight was the first time she didn't really eat much for dinner because she complained that her stomach hurt. We were outside on the playdeck for dinner and she pushed her plate away and said I am not going to throw up Mommy!  I knew then that her stomach hurt, and I asked her, and she said it did.  Daddy asked her if she wanted to go back to the room and and she was ready to go back.  Thankfully Emily didn't get sick and again has been doing as well as to be expected.  However we can tell that the chemo is starting to affect her because her skin color is changing and her demeanor is changing (meaning very aggitated again) and really tired.

Doug has been doing a lot of running this week and taking care of us.  He has been amazing though taking care of food for us, while all the while doing all the other normal things that has to be done during the day, thank goodness we have a sitter to keep the girls.  When dad brings the girls up at night, he brings dinner and at least two of these nights we have been able to go outside on the playdeck and eat dinner as a family, which has been awesome and really nice to have dinner all together. Gotta tell you, Doug has been doing a great job with dinner, I told him that he can take on those duties at home.  :)  Doug is such a great man and really cares about his family and being with us, so I treasure all the lovely things that he does for us, it really means a lot.

Thanks for the visitors while we have been here this time.  I really appreciate, Kira (my Richmond Mommy friend), Jessica and my mom and of course daddy and the girls for visiting.  Emily enjoys the visits.  Sometimes she is up for it and then other times she is not.

Doug and I talked for a very long time the other night over the phone just about our situation, family, friends or the lack there of and life in general.  First Doug is an amazing man, father, husband and just in general wonderful for all that he does. He also told me how he felt about me and how he loves what I do for our family and of taking care of Emily.  But it is hard for both of us, we cry, we are sad, we smile, we laugh, but all the while there is a lot of worry for both of us behind the scenes that we share with each other, but we are dealing with the cards that are dealt to us and never ask for sympathy, but just consideration.  This is hard, and for all those parents who have children with cancer knows exactly what I am talking about.  Its a journey that you never want someone to deal with and when its you own journey to deal with, you just learn to make things work and learn to make everything work out.  We have met many parents along the journey and along the way try to meet more parents to get better understanding about this life we now have. From one cancer parent to another, this journey stinks or for better terms IT SUCKS. I read Rockstar Ronan's Journey, who also has neuroblastoma, and this is scary as hell. Within the past week, two other families lost their child to neuroblastoma and we have been reading along with their journey and sharing along their journey), but this whole things just SUCKS and all I can say is I HATE IT.  There are so many decisions that are made, there is a lot of crying, there is ups and downs, there is worrying, there is a lot of time away from family, lots of hospital stays and just honestly lots of lots of things.   This journey has been especially hard on both of us, and then hard on our kids.  We take each other, and learn to live on a day to day basis and all the extra added things, it is really hard to deal with, but we do it.  This has been hard because we lean on each other a lot and we are both learning to deal with this life and each day we just try to take it in stride. I do have other mom's, whom I've never met that I talk to who also has gone through or is going through this neuroblastoma journey with their child, Stephanie (sonKaden) and Rachel (son Ethan), whom we text or email.  And they are both great with anytime of the day or night, you guys are amazing, so thank you for being there. I just want you to know that it is great having you!.  And then my local momma, Sarah, whose son, Wilson just finished his treatment!  I know, this is hard and we all have life's problems, but you know I look at it like this, put your big girl/boy panties/underwear on and deal with it.  I can tell you when this is said and done, Doug and I will be there for others and definitly help with this journey, we will be there for them 24/7 because this is a journey that you need a support system and without that support system, it makes life hard.!  Our families both try to help as much as they can, but its hard for them too, to see Emily going through this, seeing us go through this and then also having their own life to deal with, but we still thank you all for all that you do for us, but Doug and I have found ourselves mainly going through this journey with Emily, ourselves along with the girls. Its hard and honestly, it sucks !  Along this journey there are so many things that you realize, life is too short to complain about the littlest things, because as cancer parents....you know what I am talking about, you also realize life is too short to talk about one another, instead realize that why can't everyone be friends, whether it be from one parent to another parent, from one mom to another mom, from one dad to another dad, but life isn't like that.  It just sucks.  what I really can't stand is someone being nice to you when it is just you, but when they are around other people they act like they don't even know who you are.  Really. We are the same people that you just talked to.  REALLY?   Anyway.  I HATE CANCER, I hate that our family was chosen, but as I said before...we will deal with it and we will learn to make it through...with the ups and downs and Doug and I holding each others hands along the way.  We dont want to be away from each other, we spend enough time away from each other with the hospital visits as it is, so when we are home, it is important to spend all the time we have together as a family!  This journey is about Emily and making sure we do whatever we have to do for her and keeping the rest of the family together and happy as much as we can.    Sorry again for another venting session, just needed to vent.

We also learned that CHOP never received the CT Scan that was supposed to be sent 2 weeks ago, so we had to get a copy of that and Doug had to overnight it to CHOP.  However, CHOP wants us to get another CT scan prior to us heading there.  Dr. Gowda has told them she should be ready in about 2 weeks for her surgery.  Doug and I are pretty nervous about it, but we know with Dr. Mattei she is in great hands.   They want us to come out a few days prior to the day of surgery so that we can have a meeting for a pre-op to discuss the surgery and also meet and talk about Stem Cell Transplant.  (Any CHOP parents reading this, please feel free to comment here and let us know anything you know about CHOP and Stem Cell Transplant).  Some of the things that we are worried about with having the Stem Cell Transplant here at VCU is that they don't have pediatric nurses that directly deal with pediatric patients 24/7 like the 7th floor does.  They have only 3 nurses that work with pediatric, however if they are not there, you are left to deal with the other nurses.  This worries us because of many of the steps that need to be taken for the Stem Cell.  We have a meeting scheduled with Dr. Goddar (who handles all of the stem cell transplant here at VCU) Thursday, May 12 to talk about the stem cell transplant and also have Emily's counts checked.  VCU is one of the only hospitals that doesn't have a Free Standing Children's Hospital.   But we wonder if the Stem Cell Transplant is different with hospitals that actually have a Childrens Hospitals and if they are dealing with only pediatric nurses.  Honestly that is really important when it comes to dealing with a child, because they need to be handled so much differently and with care. As for VCU, a lot of that bothers Doug and I because the hospital is not very child friendly.  Child Life could really be around a lot more, but they are not, we don't hear from them or do they even come around.  (you hear from them, when you tell them to come by) and then you feel as if you bothered them.  Anyway, just another vent session.  I don't mean to make these post about venting, but sometimes just getting out those things that Doug and I feel, it feels a little better about just getting them out there and in the open.

Overall Emily is doing better than we expected with this round. Which is awesome.  As of right now, we are expected to go home tomorrow evening (with tomorrow being the last day of Round 5's chemo) and go home with fluids for the next three nights and we have Periactin should we need to use it.  That is the plan.

We did talk with Dr. Gowda today for probably about an hour and had questions upon questions, upon questions.  What we thought of her having all scans after round 5 (it was more of an misunderstanding on our part), but only a CT scan and then all scans after Round 6 to see where she stands and if she is ready for Stem Cell Transplants.    

Please send lots of love and thoughts that Friday (last day of chemo during Round 5) that she continues to handle it just as well as she has and that she will be going home tomorrow night.

Thank you all for all that you do and all of you that support us, it really means a lot to us as we go along this journey.  Thank you again! 

Emily loving on her bear that she got from Lisa at Connor's Heroes


  1. I'm so glad she handled her last round a little better. I'm praying my hardest the next round goes just as good. I say vent away. I know it helps when I write & express all my frustrations plus it really does help others see & try to understand what you guys have to go through when a child has cancer. I watched & took care of my Father until his ending day & I could never imagine my daughter or any other sweet child experience that! My heart just breaks each time I read yours & Wyatts Mothers post. My love & prayers are with you all everyday. I do strongly believe in Guardian Angels & I pray they stick by you always. God Bless. Lots of hugs & love

  2. I am so glad she is doing better this round. Bless her heart. You have an amazing family and I hope you have a wonderful Mother's Day.

    You deserve it more than any mom I know this year. Hugs!!!!