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, March 9, 2012


I'm fighting severe exhaustion tonight as Emily went to bed late last night, for me to wake her up early today to have a bath and breakfast  
and so that Emily would fall asleep in her MIBG spect scan. I'm also sorry if I haven't updated as much, but internet service is rather patchy hear at the Ronald McDonald House and we forgot our Wifi service.

Yesterday we went to the hospital, Helen DeVos for the first time. Such a beautiful and new hospital and lots of wonderful people. Emily's nurse Julie, is awesome, very attentive and great with Emily. Emily had her port accessed for the 2nd time ever since having it in order to get her labs and MIBG Injection.  It was a bit more traumatic than it was the very first time, but we were expecting it to be but she really flipped out. However once it was in she said it wasn't as bad as she thought but she still didn't want it to be messed with, but she did get an prize. We were also explained that she would need to be either accessed again the next day (today) or just leave it in, and Emily was adamant that it be taken out understanding that she would need to be accessed again today! But she would need to have an IV again for the scan today because of the CT contrast that would be needed. 

I didn't sleep well last night for many reason, but of course one of them being part of this and what Emily is going through and what options would and won't be available to Emily...This morning after Emily and I ate breakfast I received a phone call from my mom of news that I didn't want to hear. It was rather heart breaking and one that I didn't expect. She said she wanted me to hear it from her first and not someone else...my father passed away overnight and was found this morning... while my father is not one that I have been close to for many many years and we haven't talked in probably the last 7 years, it was still rather heartbreaking to know that he passed and that he never met my husband, that he never met Emily and Brianna and only met Jessie whens he was very young was hard.  I had hoped one day that he would get his act together and be a different person.. Although we were not close and biologically he is my father, and I considered my stepfather to be more of a father to me, it was still really hard to swallow, but yet at the same time I knew that I did try to make things work with him a while ago.   Anyway, I am not saying all of this to say I want anyone to say "I'm sorry" it is more because I want people to realize that anyone very close to you or family could be taken away from you tomorrow and you are only left with what you last knew of them, but love all those that are close to you. Anyway, this really didn't start the day off that great.

Emily took her 3rd accessing pretty well today, she did cry, but she did better with it.  The tape over the needle is hard, because some of it hits where they had to cut into her skin to place the port and she screamed with that, but overall we were so proud of how well she did today. Letting Emily go to bed late last night and getting up early, definitely helped with the scan today at 1pm. Within about 10 minutes of the scan Emily had fallen asleep, she can't move at all for this one since the CT scan is fused into the MIBG so she has to be in the same exact position.  But the falling asleep really helped her for the 90 minute complete scan.  The ladies in radiology were very easy to work with and were great with us.  I was so proud of her for doing so well with the scan, especially when prior she cried not wanting to have a scan.

After the scan we went to meet on the oncology floor with Dr. Sholler. It was awesome that we didn't have to wait long after the scan. Helen DeVos talks very highly of the spect MIBg and once Sholler came in and showed us the scans, we can completely understand why everyone speaks so highly of them.  So again in basic terms, Emily scans are stable...the spot in her skull, L4, illiac wings, femurs were still showing. They did see a spot on her spine in the T9, however they are not calling it new because with a regular MIBG scan it would be very hard to call because of everything around it that would show on the MIBG would not be MIBG Avid.  The 360 CT/MIBG scan was rather amazing because it showed everything and showed whether the spots that Emily has are either in the cortical bone or soft tissue, and they all showed cortical. There was an additional spot in her skull but she didn't call it a spot, she said that Emily has some sinusitis going on which showed that spot.  So we have 7 spots that Emily has instead of 6 (that constantly changes) that we need to worry about and that we want to one day get rid of.

So, the options and what was available from Dr. Sholler.  Sholler is amazing and she was great with Emily and Emily took to her very well! She is very gentle, personable and easy going with Emily, and us which made things go a lot easier.  The hospital has a much slower pace than what we have been used to, so it made the experience much easier on us and not so stressful. Dr. Sholler knows her stuff and could answer questions with ease and we felt comfortable with her.  She didn't rush us and try to get us to hurry or make a decision with what she had thrown at us, she sat there and answered all of our questions and walked through everything step by step and even writing it out. Emily does qualify for 3 of Sholler's trials. TPI-287 with Irinotecan and Temozolomide, Nifromax with Cyclophosamide and topetecan and then DFMO with Etoposide.   We spoke to her and she stated that she felt that Emily would be eligible for CH 14.18 Antibody Therapy should we be able to clear more of her disease, but that she felt that she was eligible for the HU 14.18 for relapsed/refractory disease and wasn't sure why we were told she was not.  So, they were looking to see if we wanted to go that route could that get that opened for us there. She walked through everything with us and then said she didn't want us to make a decision there, but that how about we come back in the morning after we have had some time to sit on it and and we can discuss it further after we have had some time to think about it. So we will meet with Sholler at 9AM tomorrow to talk about things and answer any other unanswered questions.

So with scans 2 weeks ago and we are still sitting at stable, Dr, Sholler still feels that shooting for NED and looking for a NED Party is possible. She again used the word that we have HOPE.  We are no where near close to this journey being over and traveling just appears to be a bit more than we had really thought, however like she said if we don't do anything because she still has disease in her bones, that yes it could still spread and we don't want that.

Doug and I have had some time to talk about things, look over the paperwork that Sholler has given us and once we make a decision on what we would like to do after making the decision with her we will update. 

We will be flying home Saturday through the Wings of Mercy again.  We have to get the rental car back by 5 pm tomorrow night and the Ronald McDonald House said they would bring us back to the RMH.  However our flight to head home we need to meet the pilot at Holland, MI instead of Northern Air where we came in, so we are waiting to hear if the RMH can take us there, because if not we are going to have to see if we have any other options.  But we do need to get home and get Brianna home and also I will have a funeral to attend.  We are ready to be home, its been a long and exhausting week.  We are overwhelmed with decisions and we miss the kids.   The Ronald McDonald House too is very strict here, so if we have to head back here at all, we will look to stay at the Renucci House instead of here.

Remember to hold all those that you love close and near and dear to your hearts and always tell your kids how much you love them and hold them every night.


  1. HOPE! Such a wonderful word! Sounds like you are right where you need to be for Emily right now. Sending you love!

  2. Shannon I am so sorry for the loss of your father. I too lost my mother 7 years ago and she had only met 6 of my 8 children twice in those 7 years.
    Emily keep on fighting! You are such a strong young lady and we are continuing to pray hard for you and your family. Emily I miss you and hope to play soon. (Alex) Hugs and prayers to you all. The Bowles Family