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

Monday, June 27, 2011

Cancer free

Results of CT scan = clear!!!
Results of MIBG scan = clear!!!
Results of bone marrow= clear!!!
No evidence of disease!! Gracie is cancer free. I got a call from the nurse on Friday as we were heading out to go camping. She told me the results and we were So happy and relieved. I hung up the phone and sobbed. Thank the good Lord for blessing Gracie and all of our family. A huge weight has been lifted. We had a wonderful weekend camping. Gracie would give me hugs and say " that's because so happy that my cancer is gone" she melts my heart. We cannot even express how happy we are!
Today we drove back down for scan review with Dr Granger. She said the happiness on our faces is why she is able to do her job. Because she knows what is possible. I have to admit there are a few times I seriously doubted her when she told me it would/could get better. then They paged the surgeon to come over to clinic to pull her central line out. She was scared but she held real still and it went very quick. She is so happy to be free of the lines and having dressing changes. It has been 10 months with the line in. 4 with the first one and 6 with this one.
So, where so we go from here? She will continue with milk feeds to supplement her appetite, and gain weight and strength! She will have scans every 3 months (CT and bone scan) for the first year. After that, it will be every 6 months for 2 more years, and blood work and EKG/echo for another 2 years, providing she doesn't relapse.,heaven forbid. So she will be followed for another 5 years, until she is almost 10!
We want to thank you all SO much for all the love and support, kind words and prayers!!! We couldn't have made it through without you, and of course the love and comfort of our Savior and heavenly Father. We are so blessed!!!

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.

Sunday, June 12, 2011

Gracie is doing well and her appetite is slowly improving. She still doesn't eat anywhere near enough calories on her own, so we continue with the milk feeds to supplement. Tonight is her last night of TPN and she will get the central line out in 2 weeks. :) She is happy and getting stronger. She loves to play with the other kids and feel like a normal kid. she also loves to sing and dance to Taylor Swift and Michael Jackson. We are going to go to the Taylor Swift concert in September, we hope to find a way for her to meet her. we will see. I didn;t end up doing the lemonade stand yesterday, but hopefully soon. Thank you all for always praying and loving our girl. xoxox

Friday, June 3, 2011

Next weekend we are doing a lemonade stand to raise money for childhood cancer. check it out.
So, once again, it has been a long time since I have updated the blog. We have been having a good time trying to create a new normal. It is nice to not have to be anywhere very often. Gracie is still on TPN for 12 hours every night for weight gain. She weighs 31.5 lbs now and is looking good. :) She is getting stronger and trying to be a regular kid. She is happy except when she's hurting and her appetite is hit and miss but she is improving. We have been going to the clinic in town for her labs once a week, and then they ship 7 days at a time of TPN. She will go down to FT worth MOnday for clinic there and then start her last 2 weeks of accutane!after that 2 weeks, she will have her scans.