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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Thursday, January 12, 2012


We arrived in New Jersey on Sunday, to stay at Timberlane Campground. Thank you to the campground so much for your kindness and generousity and offering a discount for us while we stay with you for Emily's treatment. It means so much to us and our sincerest thanks to you! This week while here in Philly/New Jersey we have really tried to keep ourselves busy and not think about the obvious of why we were here, scans to see if the MIBG Therapy was affective. Emily finally got to meet her friend, Sue, who drove 6 hours to see us and stayed in the clinic with us and went to the MIBG injection and lunch. Emily didn't require a blood transfusion or platelets on Monday, they actually appeared to look as if they were going up, so we were excited to get these results. Sue is such a kind, amazing woman...she is beyond amazing for many families and she deserves this for us to say Thank you and we love you. A family that we met the last time we were here, The Rinaldi's, invited us for dinner on Tuesday night. Tuesday Emily had her MIBG scan and this was perfect to keep our minds from the obvious and just enjoy the company of other adults and the kids to play with their kids. We thank you Rinaldi's for inviting us and having us over for the night. I think we ate till we were full and just enjoyed the company.

Today was result day, the day of facing reality. We were meeting with Dr. Mosse to go over the results of the scans that Emily had previously. It appears that we are no longer dealing with Dr. Bagatell and we are with Mosse, which either way is fine being that she is very well known in the neuroblastoma world. Well the news was not what we had hoped for, we had both tried to walk in there feeling very positive, but it wasn't positive. Emily's disease is considered stable, which in terms is a good thing, because it means no progression. However, there is no regression. Emily went through 6 rounds of chemo, 2 extremely high doses of stem cell transplant, 12 days of radiation, and 1 MIBG Therapy and there has been no change, No change, NO CHANGE. The spot on her skull that we had been previously told we can lay this one to bed because it is not MIBG avid, Dr. Mosse says it is and it is there and the MIBG picked it up. While this completely bothered me, it doesn't change where we are today. It doesn't change what we are doing or the reality of where we are. The spots on both of her femurs and both iliacs are still there, completely unchanged. The spot on her spine (l4) is still there, again no change. The spots that were seen on the "super scan" don't show on this scan, but they don't compare those and didn't expect to see them. But she explained they were seen in the left tibia and what appeared to be in her upper abdomen, but it wasn't know exact where it was.

The talk we had with Dr. Mosse was a serious talk today, one of which I never thought we would have. (F U Cancer) I still remember when Emily was first diagnosed and the day after the surgery the doctor, Dr. Goddair, that walked in and said you know she is not going to make it. I was pissed and said Thank you and she knew it was my cue to get the hell out of our room. The talk we had today, was not what Doug and expected and all I was reminded of is what Dr. Goddair said. So, what does this mean? Emily is not progressing or regressing, it is great that she is not progressing, but Dr Marris feels that the previous MIBG Therapy put a stop to anything progressing. Their recommendation was to go through with Round 2 of MIBG therapy and then 10 days later Emily receive a bag of her stems cell at our home hospital to keep things at bay...what is the goal we asked? She said the goal is to give Emily a "good quality of life" (we heard this a lot) and to not have her progress in the mean time. Is there anything else that we can do instead of going into Round 2 of Therapy? Not at this time Emily is not eligible because her platelets because they at least need to be at 50 to be eligible for any other trial and they are currently at 15 fighting to come back. So we worry if getting Round 2, what happens if her platelets don't recover? She said most children's platelets recover after receiving stem cells, unless there our other situations. So, we really have no where to go. We felt lost and the reality of two parents trying to make the best decision for our daughter while breaking down and also trying to remain composure for the kids, was a task that was much harder than I ever thought we would have to do. We both emphasized that we don't want to be put in a situation that after Round 2, and stem cells given back, and platelets still don't recover and we find ourselves with no other place to go. We don't want to be there. She didn't feel time was of an essence and that Emily needs to do MIBG now, but at the same time she didn't want to wait any longer than a week to start Round 2.

Questions that were asked, what does this mean to us? Does this mean that Emily will never be NED? Dr. Mosse says that with induction period of 6 rounds of chemo, 2 extremely high doses of stem cell transplants, 12 days of radiation and then 1 MIBG Therapy and there hasn't been any change, she doesn't feel that she will ever be NED and that we will be dealing with this for...well as long is Emily is alive. Doug said, "I need to know the answer to this question and there is no other way but to just ask it, will Emily die of NB?" Dr Mosse said, "Yes, but there is no way to say if it will be tomorrow, 6 weeks from now, 6 months or a year. So we need to give her a good quality of life and keep things stable." What the fuck? The pathology we received at the beginning we kept being told was good and that we will have our daughter for a long time and now it is "children with more than 3 spots when diagnosed do poorly and dont normally make it." Was this real, where we really sitting here in Philly and hearing Dr. Mosse say these words. They were real because I was wiping tears from my face, and those tears hurt, they really hurt. Who thought this is where the hell we would be, who thought that we would be dealing with neuroblastoma and trying to make sure that we make the right decision for our daughter. Who would have thought.

The struggle was then should we move foward with MIBG Therapy in hopes that we can get her platelets back up and then move forward with another therapy. Today's platelets dropped AGAIN, and she needed both platelets and blood today and this told us we have no other options right now anywhere, move forward with MIBG Therrapy. There is still this struggle in my head, is this the right thing, are we doing the right thing. We just have to totally believe with all the information that was laid out in front of us today, that we are making the right decision.

You look at Emily and she looks amazing, she is happy and just looks so healthy. You would never know that underneath she has cancer, cancer in a 4 year old. Cancer that isn't fair that our daughter has and that it will take her life. Neither of us are at a comfort level to just stop and think this is it for us. We won't stop, MIBG Therapy is where we are tonight. Round 2 admission. Then stem cells 10 days later and then other opinions with Sloan -- Kushner, Giselle Sholler in Michigan, and then St. Judes. We won't stop, and we can't stop, Emily is happy and just a joy to be around and in no pain. We can't accept the fact that it is said yes she will die, because we won't give up. So, Neuroblastoma, you can take that, and find somewhere else to go. We must find a cure for Neuroblastoma, children should never have to deal with this and parents, like ourselves, should never be in this situation wondering if we are doing the right thing treatment path and did we ask all the questions that we should have asked to do the right thing. Are we going to be playing the "Would of, should of, could of" game? The regrets and the I wishes. This is not fair and these are words I don't like my kids to say, but you know what this isn't fair.

But sad reality is, we are scared. We are scared beyond our minds. Scared to lose our daughter, scared because of all the "what ifs"! Its scary, because the reality is the word "death" was thrown at us today. I couldn't catch it, because it was thrown and smacked me in the face and nothing I could do to stop the tears, because they came. Scared because I again watched my husband, who doesn't cry about much, break down again today. Why does this happen and why did it happen here, because this should not have happen!!!!

We've asked if Emily could get a port placed so that she can enjoy life and not be limited to things (no pool, no good ol soaking baths and no dressing changes unless she is accessed). Dr. Mosse said that is something else to give Emily a "good quality of life" and we could plan to do that when we get her 6 weeks scans and bone marrow biopsy.

Please send us lots of love, support and thoughts that we are doing the right thing and going in the right direction and that we continue to make the right decision so that happy lives a long happy life with us. I know that neither Doug or I can handle life without her!

I did receive an email from an 8News reporter who wanted to meet with Emily and I tomorrow (Thursday) and do an interview to try and push about the Mattel Cancer Barbie doll. I sent her an email back and thanked her and said I would love to do this because I not only want to get more attention on childhood cancer, but we want more people to know about our amazing Emily and of course put about this Barbie, but that we are not home. Could she please wait until next week and we would be happy to do this and do a video inpatient here at CHOP. I haven't heard back from her, but I really hope to get to do this. While I know I would be really nervous about being front of a camera in front of people, my thoughts about childhood cancer, my daughter are strong and I feel it would be important. So I am hoping to hear back that it can be placed on hold until next week.

Its 3AM and OR will be here early in the morning to place the foley, I have been told they could possibly be here at 6am. So it will be a long day with no sleep if I don't get a few hours of shut eye. So I should get some sleep. I have been receiving quite a bit of emails the past few days of people asking what do we need, what can they help with? Thank you all so much for all of your kindness, thoughful messages, emails and words, they all mean so much. But really honestly we need lots of love, support and thoughts. Gift Cards for traveling since we are looking into options still and if we can get her treatment somewhere else, we will go there, donations are certainly very helpful right now. Gift cards can be sent to:

Hubbel Family
PO Box 5383
Midlothian, VA 23112

Or donations can be sent to: All donors may mail funds to the account at: Dominion Credit Union PO Box 26646 Richmond, VA 23261 Write "Emily Hubbel" in the check memo. Dominion Employees may go through the bank. or you can use the Donate button on Emilyhubbel.com. Again I just am posting this because so many have been sending emails and asking. So I want to say thank you again!

And like I said really just your love, thoughts and support mean so much. I am sorry if you have emailed and I haven't responded, I am sorry if you have left messages on facebook and I haven't responded, but honestly the past few days have been very overwhelming. I do apologize. Thank you again for your support, it means much more than you will ever know.

Make sure you hug and kiss your kids and love them with all you have. Good Night. Please hope that this MIBG Therapy will go smoothly and Emily handles this round much better than she did last time.


  1. Many hugs and prayers going out to you tonight!

  2. Shannon:
    I feel your pain, I truly do. I have been in your situation, with my own child's medical conditions. I was told several times that she wasn't going to make it, when she was around 9 years old, and today she is a healthy 19 year old. I know it's hard, but keep fighting. Do what you have to do. Fight, fight, fight! I'm sorry the news wasn't better. I'm sending hugs to your whole family right now. I am here in Richmond so if you need anything, let me know.
    With much love,
    Kimberly Dickerson

  3. I don't have any words other than I pray for Emily and your family everyday. I think about her day and night. I have a 4 year old little boy and a 2 1/2 year old baby girl, and I couldn't imagine what you are going through. I would fight too, I wouldn't give up, no matter what the doctors say. I wouldn't give up. Never give up.

  4. You will all be in special prayers especially Emily, today. My heart goes out to you two as parents and to Emily for fighting this horrible disease. I know and you both know deep down that the decissioons you make are for the best. I hear and know the love you have for this precious little 4 year old. You will always make the right decission. Don't doubt yourself. Do what you both feel is right and stick to it. I do not envy any of you. I will pray for all of you. My heart is aching for all you two as parents and for what Emily is going through fighting this nasty NB. May God Bless each of you. Monique Wood (Bruce Wood-cousin on Lynn's side)

  5. Prayers and hugs coming your way, I can't imagine what you must be going through. All I can do is send prayers and tell you I'm here in any way possible, I'm a Warrior 4 Wes and found this post via/Krista Pac her son is fighting the same fight. My love, hugs and prayers Sincerely sally Epps

  6. I will be praying for your precious Emily and for you. I can't even imaging the terror and turmoil you are going through. I am Christian and I know in my heart that Jesus is holding Emily's hand through all this and that she is loved with a love mightier than anything we can know. I hope that can be of some comfort to you.
    Pat Mallett (GraceinAZ is my blog name)

  7. Hi sweetie pie Emily. You look like you are having so much fun making cupcakes. I bet they were delicious.

    Shannon I'm so sorry for the news on Emily. But you know what, doctors can't put a time on your life here on earth. They are quessing. Miracles do happen. I have experienced one so I know. Have faith, hope and make every second of every day a precious one.

    I know you and your hubby will make the right decisions for Emily because you LOVE her to the moon and back.

    I'd love to visit Emily and you at CHOP. Let me know if it is OK. I'd like to give you some love and support.

    Lifting Emily in prayer.

    Linda Stiefel

  8. There will always be that palliative - good quality of life talks from the medical world. While in theory these things have merit, the reality is that parents want to keep thier kids alive, not just comfortable. I pray that you will have continued strength and the knowledge that no one can or should judge you. Emily is a very special little girl - her smile is contagious and she is so brave. You and Doug are amazing parents and you are not failing her. You have the right to cry and bawl and say why us. It is beyond understandable that you are frustrated and in need of a good sign. So I pray that one comes soon.
    And BTW F U Cancer.

  9. Sending many many hugs and prayers....It sucks that any parent should have to go through this. I could not imagine the pain that you are feeling. I read this story and stop and think how much we take for granted. Fight Fight Fight for your little girl. You parents that are going through this have my heart!!! You are my hero's. I pray for your little girl and also for the strength that you and your husband need to get through this!! NGUH

  10. There is nothing anyone can say really. I am sorry but I know that does not help. You two love her more than anyone else on earth so whatever you decide will be the exact right thing. I am so sorry. We are praying and our Sunday School class is praying.