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

Friday, December 17, 2010

HOME

Gracie moved back up to the regular floor last Friday and stayed there over the weekend. They increased her milk feeds and decreased the TPN til she was up to 40 ml/hr. She was doing really well and we weredischarged Monday morning to make the drive down to Ft worth. We left at 830 am and made it to her 115 Appointment at 117. Not bad! Lol
she had labs done that day and saw Dr granger. On tuesday she had the CT scan and MIBG injection. Wednesday was the MIBG scan and Echocardiogram. And Thursday was the bone marrow aspirates and biopsies. Then they realized she hadn't had her dose of pentamadine last month an it was supposed to be every 28 days and I hadn't realized. So after the bone marrows we had to go back to the clinic for an hour infusion of pentamadine, it's a precautionary antibiotic for pneumonia.
We were able to head home at 230 and made it home at 730. Gracie and grandma made a gingerbread house when we got home and she loved it. She was so excited to be home! It had been two weeks since we left straight from Tulsa to Texas.
We woke up bright and early this morning and dropped off grandma at the airport and cane to the hospital for her dental work. Her teeth are awful from all the chemo and stem cell transplant. I think she has a cavity in almost every tooth and they are just getting worse and worse so I am so grateful we are able to get it done today it was either today or in 6 months after immunotherapy is complete. She will go back the 29th to start her immunotherapy. I signed the consent forms on Monday and it was a bit overwhelming, there were 8 pages of potential side effects. It is still pretty early in the study to really know the odds of getting certain side effects but they said most kids it is like flu symptoms and pain. There are going to be 105 kids in the study and 15 from cook Childrens hospital in ft worth. This study has shown a 20% chance increase in survival rates so we are very optimistic about it and it will put her chances at about 50-60% instead of 30-40 where we are currently if we stopped now.
We feel so blessed to have had thanksgiving at home as a family and now Christmas also! We are going to have a fun 10 days spending family time together. Please continue to pray that she will stay well and happy. Love to you all and we wish you a merry Christmas!!
I don't know if I mentioned that they took out the port and central lines and put in a picc line til the 30th :) I am continuing her iv antibiotics at home

1 comment:

  1. I didn't realize that you guys were participating in an immunotherapy study. That must be exciting to have that option available, though I am sure it was intense to see the list of potential side effects. I will continue to keep Gracie and your family in my prayers.

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