Home for a Few Days

We are home tonight after being in Philly for a few days! We are exhausted because the last four days have been nothing but running from early morning til night! Emily was even exhausted and fell asleep last night at 8pm and I don't know when the last time she ever did that!

We will be leaving again Saturday afternoon to head back to start antibodies! I still plan to give you all an overview of antibodies because so many have asked, but I'm exhausted tonight!

The information that we know as of right now is that the CT scan is clear, bone marrow is clear, HMA & VMA numbers are 14 and 29, just a little bit up for Emilys age, and I will need to look up to see what they were before and labs are good, EKG and echo were good! We did have her thyroid checked because Emily was never given sski drops to take before an MIBG and we were worried about that! Her numbers are a bit high not too high that she is concerned but concerned enough that she wants to watch them! We dont have a full report on the Mibg because she wants to go over them with the radiologist tomorrow so we should get a full report on them tomorrow! They need to review outside Mibg scans to inside MIBG scans!

That's all we know for now! I wanted to keep you all updates, and I'm exhausted! I also have received a few emails wanting to know what people could do to help with our traveling back and forth for the next 6 months and honestly the best thing would be donations, gas gift cards, grocery gift cards and restaurant gift cards! We get a few of these emails a day and I don't always have time to let everyone know and this would be the best thing that would help us!

With many asking how & where to donate, here is the information:

1. 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.

2. Clicking the donate now on http://www.emilyhubbel.com

3. Checks can be mailed to our PO Box with Emily's Name on the check to PO Box 5383, Midlothian, VA 23112

Long Day #1

Its hard to update via the phone because we dont have internet here at the campground! It's still great to have somewhere to stay that is taken care of! We are exhausted from traveling to and from, running around and appointments, so early nights for us!!

Today started fresh and early of 5 AM and a long day at the hospital!

First was labs, HMA & VMA and bone marrow aspirate and biopsies and while she was under they changed her dressing! It was nice to meet another mom of a little girl that we follow! The bone marrow aspirate went ok but Emily had a hard time coming off the propofol again today and was very irritable and crying! The nurse was great and gave Emily a small dose of morphine and that helped take the edge off and calm her! Dr bagatelle was great as well coming by and checking in and everything! We were in recovery a lot longer than expected, then she needed her MIBG injection, get her CT prep and then about an hour talk with the doctor about antibodies! I will talk about that in another post to tell you about it! We finally left the hospital by 4pm exhausted to head back to campground! getting back here by 630 pm, so long 12 hour day is definitely exhausting!

Tomorrow is another long day with her scans and several tests! She said all the results she should have Wednesday so we can meet and talk about those and then head home! The only result that won't be back is the HMA & VMA because that can take 4-7 Days!

Night all send your love, thoughts and prayers for Emily! Clear scans!!!

Finally...

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.