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

Wednesday, September 15, 2010

Here we go











Gracie's chest XRay was clear on Monday! Thanks for all the prayers. They said it actually looked better than the chest XRay that was taken on Thursday after the chest tube. All of her other tests came back okay too and so insurance has approved her and her doctors have cleared her for transplant. She goes in tomorrow. She will have surgery in the morning to put in a central line and also they will scoper her throat to see what the problem is there. After that she will start Myeloablative chemo to completely destroy her bone marrow. This will go for 4 days. After that she waits 3 days to give the chemo time to get through her system. They don't want the chemo still working or it would kill the new stem cells. So they wait a few days to give it time to leave her system. After the 3 days she will receive her own stem cells that were harvested months ago. Then it's a waiting game. It takes 7-21 days for the stem cells to engraft and show they are making new blood. During all this time she will have no immune system at all. She will be in the BMTU (bone marrow transplant unit) which is isolation with strict hygeine and cleanliness precautions. She will have to have blood and platelet transfusions and will get infections and mouth sores. They said the mouth sores are so bad their mouth looks like raw hamburger meat and even explaining it that way doesn't prepare you for how bad it really is. She is at risk for organ failure and infections of all kinds. I know it is going to be bad from what I've heard from other parents but even those who have gone through it with their own children say that you can't describe it in words. So the thoughts keep coming into my mind,is this really worth it??? But the benefits far outweigh the risks and anything to help our baby girl live and be healthy is what we will do. We have no other option. I will beposting almost every day. I'm sure it's not going to be the greatest news but it is more of a journal to keep track of things while I am in there with her.I miss my other kids so much already and it has only been 4 days. I just bawled kissing my baby Von goodbye. He changes so much every day. Please continue to remember our family in your prayers but especially sweet Gracie girl. Xoxo Lisa

2 comments:

  1. Lisa I totally cried as I was posting your post. You all are so brave and are an amazing example of courage and faith! I love you

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  2. You, Gracie, and the rest of your family have an army of support behind you. We are here to help you all when things get tough, so please don't hesitate to ask us for help when you need it. The journey that you are all taking at this moment is not going to be easy, but as you said "the benefits far outweigh the risks". I will continue to be praying for you, Gracie, and your family. You guys have been doing such an amazing job with all that you have faced thus far; I know that you will continue to on that path with this new step. Here's to getting Gracie healthy again!

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