My beautiful niece Gracie was recently diagnosed with Neuroblastoma (cancer). It is still early in the diagnosis and we are awaiting results to know more about the fight that Gracie will face. I've created this blog as an outlet for friends and family to stay informed about her journey and a way for friends and family to make anonymous contributions towards her care and the mounting expenses her family will face. Gracie is a fighter and the bravest 3 year old I know. Hundreds of people love you Gracie and are praying for you. "Be strong and of good courage for the Lord thy God is with thee" Joshua 1:9

Thursday, June 23, 2011

Follow up scans

Sunday night I took all the kids down to Ft worth to stay in a motel. The mcdonald house only allows 4 people to a room, and we had 5 so we had to get a motel. We found one with a pool so that was a fun thing. WE stayed 4 nights and came home today. Monday her appt was bright and early at 745. she had labs and then they did a cortisol level check and drew levels at 30 min and 60 minutes to see how her body is doing with it. Then I took the other 3 to a drop in day care in Arlington, which is a nicer area. they had a lot of fun and were there 6 hours! it was a good thing i took them there. We went at noon for her EGD and bone marrow biopsies/aspirates. we waited til 245 before they finally got to her. the procedures were done with at 4 and we waited around for another hour and she ate 2 packs of teddy grahams. :) she did great so they let us go. She wanted to go to olive garden so we did. she actually ate quite a bit of salad and alfredo. When we first got there, they took us to a table, and I asked if they had a booth but they said they couldn't do a highchair at a booth because it was a fire hazard. first time I had ever heard that. I cant even count how many restaraunts we have done that at. anyway, I said we would have to go somewhere else, because Gracie needed a soft seat and Von needed a high chair so he would stay put. :) She didnt offer any other options. so we were leaving and the manager said he had a table with soft seats and room for a high chair. i was a little annoyed with the first gal after such a long day, and her attitude about it. i doubt I am the first person needing something like that. they should know the options in my opinion. lol
the next day she had a hearing evaluation and she did really well. she hasnt had any change since last year. she has some hearing loss in high frequency but nothing that needs a hearing aid at this point. We are grateful to learn that the transplant didnt make it any worse than the previous chemo.

Wednesday she had a CT scan and the MIBG injection. then we went to Mcdonalds and Gracie lost her 1st tooth eating chicken nuggets! she got a little freaked out at first, then started laughing. She said it hurt to eat after that, so we got her a vanilla milkshake.

today was the MIBG scan, which shows 90% accuracy if there are any tumors. if there are tumors, they light up. we will get these results next monday. She has to lay still for 70 minutes and she always does so awesome. she fell asleep the last half hour. after that was done, we were able to hit the road and head home. The ride home, we stopped evry couple hours for lortab or ibuprofen, since those bone marrows sights were still very sore. other than that, it was great and we made it home is the usual amount of time. We go back down to clinic on Monday to review all of the test results with the Dr.


  1. Thanks for the update. You are an amazing mom! Doing all this, with 4 kids and quite the long drive.. seriously amazing. And Gracie is such an amazing patient, to lay so still through everything.

    Praying so much that she is in remission.

    ps.. I am glad she doesn't have very much hearing loss. I would hate for her to have to go down that path as well.

  2. She is doing so well! Congrats on loosing your first tooth, Gracie! :)

  3. I saw a link to your blog today and have been reading through from the very first post. Gracie and your entire family is sooo amazing and strong! I can't even begin to imagine. <3

    By the way, I lost my first tooth eating chicken nuggets too. ;)