Sarah's brain before cancer drug Avastin. She did not have cancer, but thanks to cancer research and our Kosair team, Sarah's life was saved, and mine inspired to help Kosair.
The simple version. Sarah was this healthy active little kid who woke up one morning really sick- and our lives changed. We would come to find out there was a beast living in Sarah's brain called an AVM. We named it Fred before we knew it was an AVM because you only fear the unknown, and we had to wait for the doctors to figure out what the MRI images were. So to eliminate the unknown, we named it Fred.
In June of 2011 Dr. Spalding and Dr. Dashti "Fried Fred", as we called it, the technical term is SRS, which is a form of radiation that is administered with surgical precision, after all its not good to go willy nilly shooting radiation in the brain.... they hit a bullseye.
And then for whatever reason we began having weird problems and eventually Sarah was diagnosed with ARE (complex term: Affective Radiation Effect) or Radiation Necrosis (cellular death due to radiation to be simple) in her brain- the thalamic region. She struggled to speak, could not walk, lost function of her right hand and arm, and if she was going to survive it was the 800 pound stinking elephant in the room.
The answer was yes she would, it would be difficult but not impossible and at times suck. That is the fact from our perspective, that of our doctors, therapists, friends, and family members. She began to slowly get better, but was on high doses of steroids, which disfigured her body- messed with her spirit and mental body image, but Sarahs spunky and fiesty (wonder where that comes from??) and worked really hard and conservative treatment measures worked but only for a short while, a few days before my 39th birthday Ian told Sarah and I the swelling was coming back, and we had to stop weaning the steroids and increase them.
Our first thought was it was a a tiny bump in the road, no big, her brain just wasnt ready to heal yet. We were wrong. She worsened. For Sarah's dignity- I will leave it at that.
We had two choices: do nothing and watch our daughter decline and die or fight back. I dug in and found research on a drug, it looked promising, but was no longer being manufactured and there was nothing left from trials to even give as compassionate use.
That left us Avastin and there was no guarantee that it would work, or that it would not kill her, it was our best option, and it came with risks- aside from death- because death does not scare us, we all die- studies prove that.
Our doctors thought if we went through the femoral artery up into the brain we would have a better chance- truth is they didnt know- we didnt know- and on September 11th (she was born on Friday the 13th- we dont do dates either) we gave our hugs and kisses down in the belly of Kosair in the entry of interventional radiology... and waited.
Sarah did great. It worked. We are holding our own right now and gaining ground. Its been the journey from hell but our doctors walked each step with us. Our story is far from complete, we are still traveling along the road of what ifs but we are living. LIVING not merely surviving waiting for the next bad thing to happen. That right there is because of the support of our Kosiar family. The funds from this event will touch lives in ways you could never imagine. These funds will bless kids with cancer and save kids like Sarah who didnt have cancer- but really didnt fit anywhere- because our illness was weird, but the kids with cancer were treated and observed and their treatment had properties to help with the progression of Sarah's disease. It is absolutely nuts.
Sarah wants to be a scientist. She always loved science, but now she is passionate about it because she wants to help kids like she was helped. Sarahs an awesome kid. Donate today and honor her.
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