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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Tuesday, March 8, 2011

Tuesday, March 8, 2011

Emily and Daddy waiting in the clinic.
Mom here, Emily is still sleeping and I am awake.  I fell asleep last night with the laptop in my lap hoping to tell you about our day yesterday, but that didn't happen.

Emily playing a game on the iPad
It was a long day yesterday, especially in the clinic, because we were in the clinic a lot longer than we usually are.  Emily made counts and we found that out within an hour and her WBC are back to 3.2 which is back to chemo world counts.   We waited for the doctor to come in, but the nurse practioner came in and we discussed with her about the HVA and VMA and our nurse had stated that they had gone down, but I wanted to get what they were when we started this process.  When the Nurse Practioner came in, she said they had gone up!  WHAT?  Doug was pretty upset because there wasn't a consistent of what it really should be and he felt that shouldn't we see the levels going down since she has been on chemo? What a minute.  We were so confused, it felt like we were just getting a runaround.  We were told that Dr. Godder was going to come in and we waited what seemed like a long time and honestly it was a long time.  We got to the clinic at 11AM and didn't leave to go to the room until about 4PM.  Again we never saw the doctor.  Emily is starting Round 3 which is a new round for her and the chemo is different as well as how the protocol for her time is different.  We were told that we would see Dr. Sissler (which we haven't met her yet, and I am not sure if that is spelled correctly) in the room and we could get our questions answers and walk through the new round of chemo.

10 minutes to 7 came last night and still no Dr. Sissler, the residents and whoever else came in and we talked about the HVA and VMA, which they didn't have answers, but assured me that Dr. S would be in and we could talk with her. The nurse was starting Emily on her Fluids because they finally came in and I asked if she could talk with us about the protocol.  As she started to talk to me about it, I had questions and didn't understand some things and the doctor should have walked us through this anyway, I asked for someone to come in.  The attending came in, but she didn't have all the answers that I had asked and at that point I didn't have a reasurrance of starting a new round of chemo without the consultation of a doctor like we should have had to begin with.  Dr. Gowda explained to us with every new round (new drugs and procedures) we would be walked through what the process was and what to expect.  As a mother this also helps me to make sure that what they nurses are doing is the correct thing.

So at the point the nurse took her off the electrolytes that she needed for the protocol and I asked if she could just run saline. She brought it and hung it and said she needed to find out with the overnight doctor at what rate.  We were fine if she was going to be on IV for hydration purposes overnight, perfect being that she was going to start a very toxic round of chemo that dad and I were already super nervous about to begin with.

The oncall doctor came in about 1030ish last night and said he wanted to start Emily on D5, which the oncall doctor was someone we had met back in the ER a couple of weeks ago and he was super nice then.  I asked him what D5 was and he said Dextrose, sugar water and I told him since she is eating and drinking normally there is really no need for that and he was adament that she needed.  She doesn't need it, she is not on chemo right now and honestly she should be at home since we haven't started chemo, there is really no need for it. I also explained that Dr. Gowda or anyone else for that matter has never had a problem with just using saline IV fluids until we need to use Dextrose (D5) should she not be eating or drinking and needed that.  He seemed rather ticked at the fact that I was going back and forth with him and that I finally looked at him and said listen if you say that you have to give her D5, I will tell you we are heading home for the night and see you back tomorrow when the doctor is ready to see us and talk about the new round.  He said let me go and read the notes and I will come back. He came back and said I am just going to keep her off the IV for the night.  Not a problem, sounds ideal in my world.   I talked to Doug about it and he was pretty ticked hisself, this whole matter has been very frustrating in itself.  Both Doug and I talked to Dr. Gowda about the dextrose and he was very fine with not giving it as well as we are completely on organic food and it not to have them bring in any food here.

Obviously after the day we had yesterday, Dad and I are even more ready to have a second opinion at CHOP and go from there.  We did get the information over to the nurse in the clinic and they are already starting to work on.

At this point, we just wait for the doctor to come in so we can get this started.

I just had to share a picture of the girls over the weekend. Of course I couldn't get Brianna to look.


  1. I can only imagine how frustrating this whole process is. I hope you guy are able to find a doctor that knows and do not get the run around. They should not do that when a child is the patient! That is just crazy!!!! In my thoughts and prayers!

  2. My prayers are always with you and I am sorryyou have gotten the run around.

  3. You know, these dr.'s may get upset, but never let that get you down. You are on top of things like a Mama should be and you know what's best for your child. Good for you for doing all of your homework!
    We think about Emily all the time, as my son was recently diagnosed with two tumors in his head. I really wish the best for all of you and will continue to pray!
    Roxanne @ Children Teaching Mama blog