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

Sunday, June 6, 2010

a rough 2 weeks.

all the pictures i have from the last two weeks are of her sleeping cause she was so sick and wouldnt smile for anything. It would just make her mad if i took out the camera when she was awake.


We were hoping to be home for 2 weeks before surgery. it turned into 4 days. Gracie had not been eating and also not keeping much down of the tube feeds. She was complaining of tummy pain on the right side that monday after chemo and then she was vomitting some blood that night. I called the oncology doc and they said to turn her feeds off for a little while. the next evening she developed a fever and i took her up to the hospital and they started antibiotics and ran a blood culture which showed nothing. and did a chest and tummy x ray which showed nothing. the next day she had a CT of her abdomen done to see if there was anything else going on. The CT results were : There are a few lymph nodes in the lower chest that may be slightly more prominent than on the previous study: however, the patient's left suprarenal mass and retroperitoneal adenopathy have decreased considerably since the 3-5-2010 study. There now appear to be some dystrophic calcification within the suprarenal mass and some of the retroperitoneal lymph nodes..
the tumor appers to be 4 cm by 4.5 cm. this is down from 10 cm when we began so that is great.
She kept puking and hurting a lot. she spiked another fever a few days later and they did another blood culture that came back Gram positive rods. which is usually a skin infection. They think maybe it was from the C. diff which came back positive again as well. She also had other infections and infection around her g button site. they did an EGD to see if they could find the tummy pain and she had severe esophogitis, which is from all the puking and reflux.
It is hard to describe how bad she actually was, but it was to the point where I thought we might lose her. It made me think a lot about the will of the Lord and maybe it wasnt His will for her to get better. I think once i came to terms with it, was when it all turned around. Her white counts came up around Thursday and it was a night and day difference. We were able to come home yesterday and she is doing well and so happy.
surgery was supposed to be tomorrow but the new plan is to give her another week to get stronger and recover, then do the 5th cycle of chemo next week on the 14th, followed by surgery 3 weeks later. It has been an emotional rollercoaster these last 3 months. i know it will continue to be, But the Lord is mindful of us and we feel His blessings every day. I hope I can let His will be done and trust in His plan for Gracie. She is an angel on earth. I am so grateful for every day I have her.



5 comments:

  1. The Lord is mindful of you and Gracie, and I know it is as hard for him to see her hurt but what a strong family will you're becoming from all of this. Trust in the Lord with all thine heart and lean not to thine own understanding. We don't get it but he does. We pray constantly for you, even alisse (4yrs).

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  2. I don't know how you do it Lisa. You are amazing. Hang in there and we will continue to pray for everyone.

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  3. We will continue to pray...positivly and with a loving heart. You are always in our thoughts
    Ms.Karen

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  4. All our thoughts and prayers are constantly with you! Truly! I think about you guys non-stop. We pray for your family every night as a family. I'm absolutely in awe of all you are dealing with and how you have such faith. Love & hugs from Colorado! <3 Mel, Pete & kids

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  5. Our prayers are with you Gracie and family! Get well soon!

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