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Callahan Derstine

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Calli is one of our Alex's Million Mile Gold Ribbon Reps, representing one type of childhood cancer. Meet all our Gold Ribbon Reps here!

This is Callahan's (aka Calli’s) story.  It was late May of 2011, a beautiful spring day, and Calli, then 13, decided to finally put together the trampoline that she and her brother Aidan had gotten for Christmas.  With help from dad, it was all together in no time!  As she was climbing up and preparing to jump in the air for the very first time, she had a bad pain in the middle of her spine.  She could not jump.  She tried and tried, but just could not jump without much pain.

Her dad and I figured that she pulled a muscle or perhaps just had some growing pains/cramps from being a 13 year old girl.  A week later, and with her pain was worsening, off to the pediatrician we went.  The doctor said that she thought it was a pulled muscle as well, but possibly a slipped disc. A slipped disc?  We could not remember anything that would have even been close to an activity where she would have slipped a disc.  Well, the doctor ordered an x -ray, which was all clear.

Two days later, she began to get numb and tingly feelings down her leg, and now it hurt to cough, laugh and talk. The thing is, it only hurt in one spot, one very long spot on her spine.  It did not hurt around it, not when she moved, not when she bent, but a constant pain on her spine.  We were referred to an Orthopedic Doctor.  By the time we went to the appointment, a week later, she had fallen several times from her leg giving out on her.  

She would walk and boom just fall, her left leg was giving out and now totally numb.  The Orthopedic Doctor thought it was extremely rare for her to have a slipped disc, due to the fact that she is a healthy teenage girl, and does not do extreme sports or anything.  So he ordered an MRI.

A week later, we were getting a lumbar MRI.  She was in such pain during the MRI, but made it through.  On our way home, we had stopped to see my friend who lived near the hospital.  Her husband said "Don't worry everything is fine, you know something is wrong if they don't let you leave, or if they call you back in right away.”  Well, little did I know that the phone I left in my car had two missed calls - one from the doctor telling me to call him back, it was urgent, and another from the hospital telling us to come back for another MRI.

As I heard those two messages, I was scared, and my friend and her husband prayed for me.  I got back in the car with Calli, and told her we had to go back and get another 2 hour MRI.  On the way, I spoke to the doctor, and that is when he told me that she had a very large tumor IN her spinal cord.  That’s when everything went numb.  I had to tell Calli, and she cried for a minute, but perked up right away and shared a scripture with me to comfort ME.  

So, a day later, we ended up at the Children's Hospital of Philadelphia to meet with a neurosurgeon. By then she could not walk anymore without falling.   Two days after that,  we kissed our baby as she rode into the operating room to have three quarters of her backbone removed, in an effort to try to resect a tumor.  

All along, we were told that 99% of tumors found in the spinal cord were benign.  Well, as our luck had it, she has the most rare, most aggressive kind. It could not all be removed, and they found even more all up and down her spinal cord.  Glioblastoma Multiforme.  Huh? That is a brain tumor, in her spinal cord, and it is a stage 4.

We spent three whole weeks with Calli in the hospital PICU, oncology and rehab. They told us that she would never feel her left foot again, but three days after surgery she did.  They said she would need a brace for months, possibly a year or so, and she graduated out of it in just two days. They tell us that no matter what they do, she will die. Well, they have been wrong before, and we believe that Calli is a HERO, and a FIGHTER and she will prove them wrong again.

She has just finished 6 1/2 week of full cranio-spinal radiation, and Temodar chemotherapy.  We get a 6 week break, and then will have another MRI. Then what?  They say three different chemo drugs for a year. Then what?

Calli is my hero, she is strong, always upbeat, has never believed their diagnosis of death, and has proven that a positive attitude really changes you and heals you!  We are all believing and knowing that God will heal Calli.

Written by Lucy Derstine, Calli’s Mom
August 2011

Sadly, Calli passed away on July 4, 2012 at the age of 15.


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