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, October 13, 2011


Its been a long few days while we waited for CHOP to review Emily's scana and results that were sent. While waiting for the information to be reviewed, I had seen on a 9-20 CT scan that was done while Emily was inpatient in the BMT unit, that said "Possible new bony lesion in inferior pubic ramus on the right!" and if you all remember they did this CT because they thought Emily had pneumonia. No one had ever talked to us about these results, it just so happened that I was looking through everything and read that note.  I emailed Dr. Gowda to see what his response was and also emailed Dr. Bagatelle just to let her know that we were concerned.  Dr. Gowda called me a few hours later and said he had to call the radiologist concologist and was advised that this spot has been there since the beginning and it was never noted in any of the CT scans before, however they were going to add an addendum to indicate that information, and that he also indicated this was a non specific site and that he was sorry it was not indicated prior. 

The wait from Dr. Bagatelle was difficult, because all we could do was continue to think the worse of what we had been advised.  Having your child's doctor, the one who told you almost 1 year ago that your daughter had cancer, that she is progressing even after 8 rounds of chemo, but that they could not indicate how much, but there was progression, was devastating. 

Tuesday night we finally received the call from Dr. Bagatell. Both Doug and I was pretty nervous about the phone call, our nerves and anxiety was pretty high.  She gave us bad news but good news.  Bad news first... She said, "yes Emily still has the spots and typically we would like to have her clear of spots by time she starts radiation, but not all children are typical." Good news next..."From previous scans to most current scans, our senior radiologist oncologist does not see progression.  We also no longer look at the brightness or dimness of the scans, we look at the number of spots and any obvious growth." So, really the bad news, was what we already knew that Emily still had the spots and they were unchanged from beginning, however they do not see any progression or changes.  She also reviewed the CT scans with a senior and said the oncologist said: "She did not think it is something to worry about.  She noted that that area was not always completely imaged on all the other CTs, so the lucency that was commented on could have been there before.  She also reads MIBG scans, fortunately, so had the expertise to look for that particular spot on MIBG.  It did not light up, so her recommendation was to follow it over time."

With all of that said, Doug and I finally feel a bit at ease.  We feel at ease that we just follow this spot that was seen and that she was confdent with her responses. Dr. Bagatell recommends us to move forward with radiation.  After radiation if the spots are still there, we will still move forward with antibodies. Antidbodies should clear them up and like said she if they do not, there are other things that they can do, as part of other clinical trials that CHOP offers.  She is going to have the radiation oncologist contact Dr. Song at VCU to go over the sim and Emily's radiation that is scheduled next week, and if they feel it would be better to have radiation there, we will go there, but if they are comfortable here Emily will start radiation on Monday. 

Last, after all of the discomfort and not 100% information from VCU, we feel that it will be better for Emily to have her antibodies done at CHOP.   Antibodies can be deadly if given too much and not effective if not given enough and there are a lot of side effects from the antibodies and it is very important that anyone that is going to be in Emily's care knows what to do should a situation arise.  We as parents don't feel comfortable enough to feel that VCU could handle if something were to happen.  Dr. Bagatell is working on a schedule for Emily to start antibodies after radiation.  She said that they like to have the scans done by them and after scans start the first round of antibodies.   Doug and I also feel at ease with moving forward with CHOP should there be that chance that Emily is not clear after antibodies because they will be familiar with her and her spots. 

Radiation should be finished on or around November 1st and then after that we will be heading to Philly! Sue, be ready for us, because we can't wait to meet you!  You are such an amazing woman!! Dr. Bagatell is working on a schedule,. so we will have a better schedule coming soon and know what we are doing moving forward.  

We have 100% confidence in CHOP and their care of Emily.  What Doug and I just went through with these scans because of VCU is not something that we ever want to go through again.  We have confidence in CHOP in knowing what they are reading and what they are providing to their patients (parents) and that it is accurate information. 

Thank you everyone for all of your thoughts, prayers, love and care, gas cards, and help while we went through this devastating period of time. If I could sit and tell you all that Doug and I felt and went through during this waiting period, I would, but I can't.  I don't want to ever have to go through that again and I know damn well Doug doesn't want to either. Neuroblastoma is a nasty disease and we have to kick it now, and I know that with Doug and I together, Emily can kick this and live a happy and healthy life.  Please continue to leave your thoughts, prayers and love and care, gift cards and gas cards as Emily charges on into the next part of her treatment.   Thank you, thank you and THANK YOU!

I am really happy to be posting a better post than the previous post, our hearts, anxiety and thoughts are resting and finally at ease.


  1. Hi Emily! I hope you are feeling well today! Your mommy says you're a very strong little girl!!! I think she's right! She also said you are going to get to go to Philadelphia!!!!! That is the city I was born in and grew up in. It's a beautiful place and Childrens Hospital is VERY special!!!! They take the best super duper care of all the kids that get to go there!!!! I say a special prayer everyday that you feel better and get all better really soon! I know it must be pretty hard on you to be sick, but just remember one thing sweetie, there are LOTS and LOTS of people thinking about you and praying for you all over the whole world!!! That's a LOT of people! Can you do me a BIG BIG favor???? Can you please give your mommy and daddy a REALLY BIG HUG from me? I live so far away that my arms just aren't long enough to do that! And I think that sometimes mommy and daddy just need an extra hug too♥ Stay strong baby girl!!♥♥♥♥♥ love and hugs from Miss Amy in Georgia

  2. Yay!! So glad to hear you have some relief. I sure hope this is the beginning of the end of Neuroblastoma for Emily. Hang in there..

  3. Patricia OrdiwayOctober 13, 2011 8:14 AM

    I'm so happy to read this post! I will continue my prays for Emily <3 She is SO STRONG & Such an Amazing Girl =) Sending lots of Hugs & Love from Kansas <3

  4. I have been so, so worried after your last post. I am so glad to read this and I can't even begin to imagine the Hell the last week has been for you and Doug. Lots of Love and Prayers to your family and Emily!!!!

  5. I just said a prayer of thanks that you have had a little bit of relief from all your worry. Try to stay positive, it is so important for Emily's well being. I will continue to say prayers for her that the radiation and antibodies treatments are successful. You have such a beautiful little girl and I want so much for her to start feeling better and for all of you to have lots of positive results very soon.