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, January 14, 2012

Reality Stinks

The past few days and honestly the past week have been extremely hard on Doug and I with what the reality of what we are dealing with right now! Hard to think of anything else other than this!! The reality of death being thrown in our faces means we know what we are dealing with. What has been said and what has happened over the past 13 months have been a lot to deal with, but the meeting with Dr Mosse has been the hardest! Dr Mosse is very upfront and honest and tells you like it is, we like that but it sucks all at the same time. We also know that Dr Mosse is one of the best doctors when it comes to NB and we believe she knows what she is saying when it comes to this and what we are dealing with. One of the biggest things that shocked us the most is Dr Mosse seemed completely shocked that Emily is not in any pain. For this we are happy she is not, we are honestly very thankful! Our heart hurts, and I can tell you I never really knew what that meant to have your heart hurt until this. The tears sting and burn as they fall down my face and the stress is the highest it has ever been. ( stress is awfully brutal to your body )!! Reality stinks that Emily's sisters have no idea what is happening here and the biggest reality is Emily has no idea either and just does what we tell her to do.

I wanted to update and explain to you all, the reality does stink, it not only stinks, but it really sucks. We honestly thought we were gong to come home and have a huge NED ( no evidence of disease ) party to say "take that cancer" and "fuck you cancer", but we are not. We are coming home with heavy hurts, fear, anxiety and everything else. I can promise you that we won't go down without a fight! I also want you all to know we have a lot of hope and will NEGU ( never ever give up)!! All of your prayers, love and support being sent our way means so much to us so please don't stop because we need it now more than we ever have! But we need you to support our decisions and not leave anything negative about what we decide to do. Doug has already started doing his research with reading, reading and reading! We already have the scans and scan reports that Emily has done here at CHOP completed and given to us, so we are ready to send them off to Sloan, Sholler and St Jude! I have been contacting a few people who know the ins and outs of NB and have been given a lot of information that we can use to read up on and then start figuring out where to go with what we have. Doug takes what information i have been provided and reads up on each of them. What I ask of all you, please don't leave messages that you are not happy with the choices that we are making or that we shouldnt do what we are doing and do something else! I want all of you to know that Doug and I carefully think out each trial, each treatment, and each step and even hospital that Emily does and we try to think of all the questions to ask to make sure that we are doing what is best for our daughter! She is the priority here and whatever we have to do, we will. We love Emily more than anything and without her here with us.... Well it would fucking be devastating to say the least. What we have positive on our side is that Emilys disease is not progressing at this point and her n mycn is non amplified which means it is not aggressive ( not spreading rapidly at this point ) and currently not in her bone marrow ( however we do know that she could have dormant cells in her bone marrow and that NB tends to hide and comes out when it wants and when it comes out it can go fast )! What we also know is that the pathology that we received at the beginning of diagnosis of n mync non amplified and favorable histology ( means she should respond to treatment) means nothing, it really just a help to know what to expect at the start of this for the doctors, and we are not all textbook here. We know this because Emily is not responding to chemo, radiation and MIBG IV radiation and like I said before could become aggressive without warning. Emily stopped responding to chemo after round 2 where the spot on her knee went away and the tumor in her abdomen was getting smaller, but after round 2 we have seen no change!

Now that Emily is completing her round 2 of MIBG therapy and then 10 days later she will have her stem cells given back to her we know that we can't do any other trials or treatment right now for 6 weeks. The stem cells will be given back to her at our home hospital and will require an overnight stay to do them. We are advised it should take about 10-14 days to see them start working. Once we use a bag, this will leave us with 3 bags of stem cells left. Her scans have already been scheduled for the week of either february 20th or the next week, and during that time we will have her broviac line removed and place a port and also have her bone marrow checked ( I sometimes wish they did a 4 point bone marrow check like Sloan) Our first night inpatient this time, Dr Mattei came by to say hello and ask how we are doing, he is the doctor who removed Emilys tumor completely back in May, we love him. So we want him to do her broviac removal and port placement. Depending on what is happening at that time with her disease re-evaluation and her counts ( platelets especially ) we will really be able to make a decision of what to do and where we should go!! If round 1 has kept her disease "stable" which is the continued hope or better for round 2! And we still have hope that round 2 could do better than round 1, it's just the wait that sucks even moreso at this point. We don't want to wait, fear sits, anxiety is the highest it has ever been, but the love we have for our daughter is the strongest. We are scared, more than we have ever been before. Scared of what tomorrow, the next day, and the next 6 weeks bring. Scared of platelets not recovering because that means that our treatment for Emily is narrowing.

Once we are home, which should be Monday sometime, we are back to clinic twice a week! We have an organization who is starting meals for us, thank you Fairy Godmother Project because this will help so much. We may even have the 4th and 5th opinions with other hospitals while we are in the waiting zone of 6 weeks with the others we have previously talked about. We are being proactive, and still trying to stay one step ahead of the hell we are dealing with. I know some others have asked what they can help us with, here are some things ( http://mirandareneeharrison.webs.com/neversaynever ) , but honestly sometimes just knowing what to ask for help with you have no idea. Our biggest help to us is just the love and support. And I know we posted in our previous post of things that can help us as well.

Thank you again for all of the emails, Facebook messages, text messages and comments you all have left. I am sorry if I have not responded but know I thank you so much and we appreciate each of them. Since all of this I have not been much of a phone talker and prefer to write it out in someway, shape or form.

Know that when we are physically ready, we want to give back to our community, our supporters, our local area and fight for more cures for childhood cancer, specifically neuroblastoma. "pay it forward" is what we want to do.

Please continue to send love, support and thoughts our way! Make sure you hug and love your kids with all your heart. Give them a hug and tell them each how much you love them!


  1. I don't know what to say. You are in my thoughts. I'm sending positive thoughts your way always!

  2. Shannon, Diug and Emily, Thanks for the update. NB is a horrendous disease as is any cancer. No child should have to deal with cancer nor no family. You are absolutely doing right by Emily by educating yourself on every aspect of treatment. Only you can advocate for Emily. You will make the right choice. NEGU

    Emily, glad to hear no pain and you are being so brave with the yuckies of hospitals. Do you get snow where you live? You haven't seen snow around here this year. We did have flurries yesterday. I am a MomMom so no snow is good for me but kids like to build snowmen.

    Lots of love and hugs to the Hubbels. NEGU

  3. I've been reading since right after Emily's fever and diganosis with this awful cancer. Reading the post before this sent me into tears. I try to imagine being told that there is nothing more to be done for one of my children and it makes me want to puke. I am so sorry that you've been given this reality. I pray, pray, pray that something, ANYTHING can be done to kill this cancer and give Emily the long life she deserves. She's such a strong, beautiful little girl and has done so amazing and come so far. It's breaking my heart and I've been sharing this anywhere I can rallying up prayers for you all. Big hugs and praying always.

  4. I love you guys! You are amazing parents, and the best advocates for your daughter! I would help you with the research, but honestly I need to brush up on it all myself! I am still praying constantly, that you all will get the miracle you so deserve!

    I also understand what you mean when you say you are not a phone talker. I am the same way! I didn't take any calls the week Allison was diagnosed, and even to this day I cringe when the phone rings! That is why they invented the text message... lol! :)

    So much love!


  5. Prayers and positive thoughts are above all cures and we will NEGU for the cure of Emily and every other young warrior fighting for survival:) You cannot imagine how much strength and confidence you are giving us, and we are sending you our Love and non-stop Prayers :) Mighty God be with you- in this time of desperation, fear, pain and anger -evermore :D

  6. I've been following Emily's journey & praying for her since the beginning & will keep fervently praying for her.

    Have you looked into Dr. Burzynski & his cancer treatment plan using Antineoplaston therapy?

    I just watched the movie this morning about his treatment for cancers & immediately thought of you all. The video is here: http://naturalnews.tv/v.asp?v=F5B32D25BDC2E1977584DF9A1DF9CC0D

  7. www.stjohnneumann.org

    PLEASE check this out! St.John interceded in my father's illness! I pray to him for Emily and his shrine is in Philadelphia. Try to go there - a first class relic is there - leave your intention - My father was blessed to have a 1st class relic lent to us while he was in the ICU and during his stay in the hospital! I BELIEVE he will help your little girl!
    Much love and prayers!

  8. keep Fighting Emily. I'm praying for you sweet girl. NEGU!!!! (Never ever give up) I would love to send some headbands to Emily. Please email me at lalalisa95@gmail.com

  9. Hi Im praying for you. Just remember NEGU!! (Never ever give up) I would love to send Emily some headbands. Please email me at lalalisa95@gmail.com so i can get those sent to you.