Norah Strong #6

Our sweet 7 year old daughter is one of the four lights of our life but is one of kind in her love of life, fashion, art, reading and of course her sisters.  The second week of August we were enjoying a relaxing week on Martha's Vineyard when we started to notice Norah was limping a bit and as the week went on the limp became a worse.  We decided we should get her leg checked out on our way home from the Vineyard so Tim dropped us off  at Winchester Hospital Sunday afternoon thinking he would pick us up in a couple hours with a knee brace.  An hour later I called to say we were going by ambulance to Children’s Hospital Boston.  Four hours later we received our first MRI and 7 hours later at 2AM in the dark of night we were told she had a mass in her brain the size of a tennis ball.  Monday morning we were told she would need immediate brain surgery.  Tuesday morning the surgery occurred and the news spiraled from there.  We were told she had an aggressive tumor that was sitting against her motor cortex and they were only able to resect 80% of the tumor.  We then heard she had a Glioblastoma Multiforme tumor which has a very low survival rate.  We were given two choices do nothing and she would succumb to the tumor or resect the remaining tumor and she would lose motor functioning in the left side of her body.  Doctors have tried for two weeks now to help us realize that if we did surgery Norah would lose motor function and more than likely the tumor would come back.  

 

Doctors are about numbers and statistics and when I asked the neurosurgeon how many patients have survived without a full resection she said 0 and then I asked how many patients have survived with a full resection she said she has had 5 patients in her 25 year career.  So I then promptly said well now you have met NUMBER 6! 

 

So  we believe in our heart and soul Norah is #6 and we are not hurting our daughter by resecting the tumor on her motor cortex, we are saving our Norah and her mind her heart, her intellect, her spunk, her drive, and her inspiration for life.  A child with a physical disability is a child who may have an uphill climb but please and thank you for that uphill climb and we will walk/roll right along side her every step roll of the way.  

 

Surgery is scheduled for Wednesday September 2 and this is our fight song!

 

But the reason for our gofundme page is all of this will come with incredible cost and change to our lifestyle.  We will make every accommodation to our home needed to make it wheelchair accessible and for her to feel independent and successful.  We will go and embrace every therapy that she needs both cancer related and motoric abilities related.  We will move mountains for her but simply ask if our loving community and family and friends can pitch in to help in any ways possible.  

 

We are Norah STRONG!