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

Tuesday, September 28, 2010

Day +4

Gracie got platelets again this morning-4th day in a row. she had an ok night as far as puking goes but her pain gets worse and worse every day. She is on the morphine continuously and also can push the button for more or the nurse can give her a larger dose. the nurse does the larger dose before every mouth care. She does the mouth care 4 times a day. She has to swish mouthwash and then clean her teeth with gel cam to prevent further cavities. I say further cavities because her entire mouth is full of cavities from the 7 previous rounds of chemo. She is going to need a TON of work when she is well enough. Some of the teeth will need to be pulled. Her mouth is what is hurting the most right now. She holds her hand over her mouth after the mouthwash and screams in pain.Sometimes just suffers in silence. It breaks my heart. I just cant imagine how much pain she is in for it to still hurt with all the morphine and methadone she is on.
Her hair has started falling out and will probably all be gone tomorrow or the next day. At least this will be the last time for that since she doesn't have any more chemo!
Gracie draws pictures and they still always have smiley faces. I am surprised it isn't frowns by now, but she continues to be happy and hardly complains at all. She does pictures on the cookie doodle app on the iPad. She still is enjoying her puzzles.
I have been annoyed at some of the comments I receive here and on Facebook but I know all of you mean well and I try to not let it upset me. I truly appreciate all the love and concern. It is impossible to understand without going through it yourself. There is too little said and done about childhood cancer and educating people about the horrificness(is that even a word.) of it. I don't share every detail about what she has gone through or is going through mainly because of the comments. I don't want to offend anyone but I wanted to say something about it. We know the Lord is mindful of Gracie and all of our family and we feel His love abundantly. Thanks so much for your continued prayers.

4 comments:

  1. I'm not sure what others have said here before me as I just discovered your blog this evening, but I do know as a survivor of neuroblastoma how much ignorance there is about this type of cancer and other childhood cancers. I can tell you that I was diagnosed at 6 months old and I'm now 35. I hope knowing there are others out there who understand this difficult journey (and please feel free to email me) will give you some comfort and I will be sending all of my positive thoughts her way.

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  2. You're right - we have no idea at all what you are going through, and sometimes when we make a comment we don't even realize what affect it may have on you, as well-intentioned or innocent as it may be. I'm sorry, Lisa. We will continue our prayers.

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  3. Love you Lisa. I think Gracie's strength is AMAZING!

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