Seeking Life Beyond The Carpool Line With a Glue Gun In One Hand and Coffee In the Other

She is Remarkably Rare: Medical Update

image

Praying has payed off. I never asked for a cure,  I just asked she be helped. Wenesday the doctor called. They sent out her case across the nation,  yet no one knew what to do. I know it sounds like a negative and it does dwindle the hope a smudge knowing no one in this country does not know how to treat our daughter. However,  the doctors did come up with a plan. It may not be the best choice; but no one knows what that is. So this is the choice that has been made:

The surgeon will remove the largest part of the tumor located in her upper back muscle. At that time they will make sure it is not in or on her spine. The makeup of the tumor allows it to fuse bones and even vertebrae in her spine. When they first went in to her tumors they did discover it growing down her spine and had to shave it off. Once the tumor is removed they will send it directly to genetics. Gentics will test the make up of the tumor and see if there are a any anit-cancer drugs that might help with the test of the remaining tumor.

This is good news. They are doing something. This is also bad news; they are leaving the rest of the tumor that is growing around and squeezing the rest of her little body. The tumor will continue to grow. At a rate of which no one knows.

Please keep sharing her story and these posts. You never know if you will reach someone who has this disease or someone in the medical field that can help. Because guess what?! It has!

A mom of a little girl, even younger than Diva, who has the same diesease reached out to me. It was a email I never expected. But when I did, I cried. I’m not alone. It is something hard to remember in times like these. I am not alone,  because He is always there. He answered an unasked prayer of mine; to find a human connection on earth. I did.  I ask one more prayer- please keep her daughter in your prayers as well. She needs them too.
Remeber we are never alone. I have shared her story via instagram,  twitter,  pinterest and the blogging world. In doing so I found a product I wanted to share. I read the story behind the story:

” I want my daughter to feel more than OK with herself, even with this syndrome. I don’t want her just to survive this. I don’t want her to be a victim but I want her to be victorious. I don’t want her to live in fear and worry but of faith and certainty. I want to empower her. I want her to know that God gave her a spirit with power not fear. 2 Timothy 1:7 For God gave us a spirit not of fear but of power and love and self-control.
But to do this, it must start with me. I must believe this and instill it in her as she watches me respond to every test, blood draw, doctor appointment, surgery and long itchy nights.  I want her to know that she can choose bravery. She can choose joy. She can choose to be OK with being Rare. She IS beautiful. She IS Remarkably Rare. As Charles R. Swindoll stated, “I am convinced that life is 10% what happens to me and 90% of how I react to it.”

I am crying reading this again. “it must start with me”.  It must. I have to stay positive and be brave. So mommies,  daddies,  grandma’s,  grandpa’s and more; stay strong. Be brave. Choose bravely.

*the mention of this product was unasked for. I simply found her message inspiring and remembering it helps me to have faith and keep moving forward. However, if you’d like to see her products visit her site at Remarkably Rare



Leave a Reply

Your email address will not be published. Required fields are marked *