In June of 2006, my perfectly healthy seventeen-month-old daughter, Kylie, began having some strange symptoms. Within a week's time, her gait had faltered and she began tilting her head to the left side. I felt sure that Kylie simply had an ear infection because I had taken her swimming the week before. Unfortunately, I was wrong; eventually Kylie was diagnosed with an extremely rare and aggressive form of brain cancer.
Kylie began her life in Ada, OK on Jan. 18th, 2005. She was a beautiful, healthy, playful little girl, who had hardly had more than a case of the sniffles until her diagnoses. In June of 2006, my family's world came crashing down around us. The visit to the pediatrician began as any typical appointment would. No one seemed overly concerned about the symptoms she was exhibiting. Thankfully, we were blessed to have had Kylie check out by a very bright pediatric resident. This particular doctor was in his last week of residency; he would be leaving the practice that day to begin his career at St. Judes. He insisted that Kylie have an MRI immediately. His theory was that Kylie had Torticollis, or a twisting of the muscles in her neck, which is treatable. However, just to be on the safe side, he ordered an MRI to rule out any other possibilities.
I will never forget the sinking feeling in my gut when I saw the same doctor return to the office with the MRI results. I knew the news had to be serious for him to return to a clinic he no longer worked for. He regrettably informed us that a mass was found on Kylie's MRI. The belief was that it had been caught early, however the tumor would need to be removed immediately. Unfortunately, we needed to go to Oklahoma City to a pediatric neurosurgeon due to the difficult location of the tumor.
Less than a week later, Kylie was admitted to O.U. Children's Hospital in Oklahoma City. Her surgery was scheduled for the next day. The neurosurgery team was able to remove all but one percent of the tumor. Kylie spent the next week in the pediatric intensive care unit and then she was moved to a private room. During this time, Kylie's pathology report came back. The news was devastating. The tumor had been diagnosed as an Atypical Teritoid Rhabdoid Tumor (AT/RT). I researched AT/RT, only to find out that it is an extremely rare and aggressive cancer. There are approximately two hundred known cases of this disease; forty some children are alive with evidence of the disease, only twenty some are alive without symptoms, and less than ten are still living after five years from the date of diagnosis. The survival rate in children under three years old is less than ten percent. 
The months of recovery were difficult. The fluid in Kylie's brain began to increase. As a temporary fix, every couple of days the neurosurgeons used spinal taps to remove the excess fluid. After two weeks, she was finally able to get a shunt placed in her head to drain the fluid into her abdomen were her body could reabsorb it. Upon recovering from her shunt surgery, we were able to come home to Tulsa. Soon after we returned home, we were informed that during the two months of recovery, Kylie's tumor had resurfaced.
The oncologist in Tulsa had considered treating with fifty-six weeks of chemotherapy and radiation; however, Kylie's father and I were opposed to any form of radiation due to the severe brain damage that it causes in children under age three. Instead, the doctors proposed to do three months of chemotherapy and conclude with three stem-cell transplants. After some deliberation, her father and I decided that this would be our course of action. In retrospect, I'm not sure if the decisions we made were the right ones. If faced with a similar decision, I'm not positive I would treat the child at all. There truly was no way to prepare for what we experienced in the months during treatment. At times, I felt that the cancer had infected us all, not in body, but in spirit.
In September, Kylie began the first portion of her treatment in Tulsa at St. Francis Hospital. In theory, we were to spend two weeks of every month in the hospital while she received chemotherapy. However, the treatment would lower her immune system and we would end up back at the hospital for a third week. This cycle continued for three months. After completing the first phase of treatment we had a two-week break and then returned to O.U. Children's Hospital for phase two.
The first stem-cell transplant went extraordinarily well, giving us a false sense of security. Kylie did not have any burns from the extreme levels of chemotherapy that have to be administered before she received her transplant, nor did her white blood cell counts plummet as they should have. After a month in the hospital, we were sent back home for a week and a half to recover before returning for the second transplant. We returned to the hospital the first week in December 2006. Unfortunately, the second transplant was a disaster. These stem-cell transplants use extraordinarily high levels of chemotherapy. Kylie suffered sever burns to her esophagus and intestines and was unable to eat. On top of this, her white blood cell counts dropped to zero.
We were blessed that she was well enough to see Santa Claus when he visited the hospital and to enjoy Christmas with both sides of the family. However, New Years day she took a turn for the worse. She had an infection in the intestinal wall that caused swelling in her belly and as a result, her lungs collapsed. The doctors kindly informed us that we could be nearing the end. She spent the next week in the pediatric intensive care unit, in an induced coma. I remember praying and watching the monitors for hours on end, looking for the slightest sign of improvement.
Despite all odds, Kylie did improve. The antibiotics finally took hold of the infection. Kylie was again moved back to her room. She began to recover slowly and in February, we were released from O.U. for the last time. Kylie's body simply could not handle a third transplant. We were forced to look into other options. The oncologist seemed to think that proton radiation would be an alternative. This type of radiation only targets the tumor area resulting in less damage to surrounding tissue. I had no idea how difficult it would be to get approved for this type of treatment.
There are only four hospitals in the United States that offer proton radiation. After being turned down by both Loma Linda and M.D. Anderson, we were finally accepted to a hospital in Indiana. This happened two months after we had returned home from Oklahoma City. By this time, Kylie's health had deteriorated again. She was no longer able to keep her food down, and she could hardly move. The day before we were to fly to Indiana, Kylie had to return to the hospital.
We were admitted to St. Francis that night and an MRI was done. I got the call after eight o'clock that night. Our trip to Indiana was postponed indefinitely. Kylie's tumor had metastasized to her spine. It was now covering two-thirds of her spinal column. Our Oncologist regrettably informed me that modern medicine could do no more for my child. We were sent home a few days later to the care of our hospice nurse. Kylie's heath continued to deteriorate over the next week. During that time she was able to spend time with her brothers and both sides of her family. I'm so thankful she was able to be at home instead of in a cold hospital room.
On April 28th, 2007 God called his sweet angel home. She passed at four o'clock in the morning while lying next to me. I cannot describe the immense pain of losing a child. All I know is that a portion of myself passed away with her. I hope and pray that if faced with a similar situation, I will handle it with as much grace and dignity, as my daughter did. Kylie was loved by all that knew her and never failed to have a smile on her face, despite her failing health.

For all who visit this site,

My close friend and "adopted step-mother" dedicated her book to Kylie. The book is titled, "Friday Fellowship" by Peggikaye Eagler. It is available through http://www.barnesandnoble.com/. Peggi is a very talented writer and poet. I believe this devotional will be a Godsend to all who have lost loved ones or struggled with tragedy in their lives, just as Peggi has been for me.

God Bless,

Teresa Kesterson

I want to thank all of the friends, family, doctors, surgeons, physical therapists, techs, hospital staff and visitors for the kindness they have shown my family and I through the most difficult of times. Most importantly, thank you Father for "trusting me with one of your most precious angels. One that you knew would need extra care and would not be on this earth for very long." Thank you, Danyelle for that spiritually uplifting and beautifully spoken sentiment, which I will never forget. It never ceases to amaze me how a kind statement can forever change one's outlook on life. Thank you Father for having faith in me even when I find it difficult to have faith in myself.

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