Charlotte was born on a cold day in February; a healthy eight pounds seven ounces, she was ahead in all of her milestones. She could prop herself up at two weeks, and stand if you held her hands at two months. Life was almost perfect; her big sister Rebekah was head over heels in love with her, she was always happy and smiling, and never had so much as a cold. Then the unthinkable happened- Charlotte was diagnosed with cancer, and our world came crashing down.
On June 22nd, 2009, Charlotte stopped moving her legs. We took her to her pediatrician that Monday, who recommended we take her to American Family Childrens Hospital. We scheduled an appointment for Wednesday, and hoped that they would tell us it was nothing.
On June 24th, Charlotte was seen by Dr. Staffstrom, Chief of Pediatric Neurology at AFCH; he ordered an immediate MRI, and Kevin and I were admitted to the hospital awaiting results.
Not even an hour after Charlotte was sent down for the scan, a team of doctors and nurses appeared and told us they found a tumor in her chest and spinal cord.
That Thursday morning, June 25th at 2 a.m., Charlotte was started on chemotherapy, and our lives changed forever.
After eight cycles of chemo, and a heart wrenching decision to forgo surgery, Charlotte has reached the end of treatment, and is currently being monitored for any changes in the tumor that is left.
She has made several appearance on the local news, and this website was started in the hopes of raising awareness about her type of cancer, and the other people in the world that are going through this devastating disease.
March 31st 2010 had been a long anticipated date for the Rufener family as this day marked the first set of scans since Charlotte had been off treatment. This was also the first time we would have scans without the aid of a Hickman or PICC line to give her the sedation medication.
Charlotte was a trooper while the nurse tried to find a vein for her IV to do a blood draw and give her the general anesthetic. Shortly after drifting off to sleep, Charlotte was taken to radiology for her MRI and CT scans while we visited Lance Harris who was staying in the PICU at the time. (Lance was recovering from a surgery to fix a gastroenterological issues he was having)
Finally, a few hours later Charlotte woke up a very disorented little lady that thought she should stand right up (bad idea right after sedation) and play. With mom and dad by her side she realised that maybe she should just lay down for a bit to gather herself. After she collected herself we met with our primary oncologist for a physical exam and to hopefully go over results. Unfortunately, the results were not ready yet. Our oncologist told us she would pester the radiologists and get us results as soon as she could and that she would call us as soon as she heard the results.
At approximately 4:30 PM, we received a call from our primary oncologist stating she had wonderful news; Charlotte was in remission! Even our oncologist was surprised at what the radiologist had found on her MRI. The part of the tumor that is closest to her spinal cord shrunk about 1/3 since December! This meant that Charlotte was now in remission as the tumor was not growing anymore.
Since getting our great news in March we have been activily spreading awareness about Neuroblastoma as we watch our little fighter grow up big and strong. We have also been working hard to promote a local orcanization that helped us a lot while Charlotte was in treatment by raising money and participating in the Suzy Run/walk this past September. While collecting donations for the walk Kristi made a bold challenge to our followers... "If we reach our fundraising goal by I will walk in my wedding dress!" Well we made our goal and Kristi wore her wedding dress the whole day as we gathered with many other teams to raise over $13,000 for Badger Childhood Cancer Network (formerly Capitol Candlelighters).
As a part of Childhood Cancer awareness Month (September) we not only helped spread the word even more throughout the month but our entire family shaved their hair off (except Charlotte). The follwing is an excerpt from our blog for the full story click here.
Charlotte's sister Rebekah- who watched her baby sister go through it all with the understanding of an adult- demanded to be shaved as well.
We asked her if she was sure- what if the kids made fun of her?
And she said, "I will tell them I did it for childhood cancer. "
In all my years of being a mother- if I had ever doubted myself, it vanished in an instant. I have never been more proud than I was in that moment.
Off came the curls, replaced by bravery, courage, and most of all, love.
May God grant you all peace in the coming year, and may we continue on this journey together as a united front.
Celebrate ever day and remember- its only hair. It will grow back.
Thank you for helping us raise awareness one profile at a time.
If you would like to know more about our story, please visit our blog.