To say things can change with the blink of an eye is an understatement for any one that has been touched by cancer. In the matter of 4 days, life as we had always known was turned upside down. My 9 year old daughter, who was healthy and full of spunk, was about to face the battle of a lifetime. When she started limping 5 days before Thanksgiving with no swelling or pain in her knee we just figured she was growing. After 2 days of limping, her knee was swollen but did not hurt at all. In another 2 days she started having pain in her knee and the swelling wasn't going down. We took her into the emergency room to see what was so quickly causing so many problems with her knee. We had no idea that we would be leaving for Seattle in 2 days, the day after Thanksgiving. On November 26, 2006 we arrived at Seattle Children's Hospital from Fairbanks, Alaska, with no idea of what lay ahead or how long we would be gone. We left behind family, friends, a job, and school, trading it all in for uncertainty and fear. I also found myself wondering how does this happen, and why is it happening to my daughter?
November 29, 2006 is a date that will never be forgotten. It is the day that we were told that Kayla had a very aggressive form of bone cancer called Osteosarcoma, confirmed from the biopsy they had just done in the OR. We would not be able to see her for a while, they had called in a general surgeon to place her Double Lumen Hickman, or as we referred to it for the next year and a half, her central line. They told us that from all of the other tests done, her tumor was localized and they saw no spots in her lungs. I think that was their bit of "good news" after the bomb they had just dropped on us.
For the next 3 days, with Kayla in the hospital recovering from surgery, we met with social workers, nurses, nutritionists, oncology doctors, orthopedic surgeons, and nurse practitioners. I had a crash course on how to care for her "line", a lesson on what blood counts were and what they mean, was taught how to give her GCSF injections, and was given a road map (her course of treatment over the next 10 weeks) that lined out what chemotherapy and how much of it she would get. We were told her tumor resection and knee replacement would happen in February, and based on how much of her tumor had died once they got it out, would determine what would happen after that. Exactly 7 days after her biopsy, I sat next to her bed, and watched the first doses of chemo enter her chest thru her Hickman.
By her 3rd round of chemotherapy her blood counts were having a hard time recovering and we started with both red blood cell transfusions, and platelet transfusions. She had made it to Christmas with a little bit of hair on her head and on Christmas day we shaved the last of it off before she entered the hospital for her next round of "poison". Watching her little body struggle so hard with each dose of Chemo, was something I would never wish on any parent. I just kept telling myself that it was killing all of the bad cells in her body and when they removed her tumor in February we were going to be on the home stretch.
For us, February 21, 2007 was going to be the beginning of the end. We waited patiently with our pager on our hip waiting for the OR to page and give us updates. After 4 very long hours we received the page that Dr. Conrad was ready to see us. He explained that the resection went very well, and the new prosthetic fit perfectly. He also felt he got very good margins, but we would have to wait to see what pathology had to say. Kayla had handled surgery very well, and she would be in recovery soon so we could see her.
The next week was in slow motion. Kayla was recovering from surgery very well, but every day I waited to hear what the pathology on her tumor was, wanting to know what the plan was from here on out, and of course wanting a date to shoot for to go home. I never in a million years expected to get the news that I did. Although they had good margins (that means that they were confident that they had removed the entire tumor) Kayla's tumor was only 50% dead. I was just sure that when we received the report that we would hear 90%, the number we needed to put her into the "good responder" to chemo category. What that meant for her long term prognosis was huge. She now had a 50% chance of her cancer reoccurring instead of the 25% if the chemo had worked better. I must have had a look of pure disbelief and shock on may face, because the next thing I remember was my daughter saying, "well 50% dead is better than no dead, mom!" How did my 10 year old daughter see the glass half full, when all I could see was the glass half empty? From that day forward I learned many a lesson from her. She taught me what it really means to live, a lesson that only someone who has faced the true reality of death can teach.
Kayla had 12 more rounds of chemo, countless transfusions, and many unplanned stays in the hospital for any number of reasons. Thru all of this, only 1 time, did she look me in the eyes with tears and say, "Mom, I don't think I can do this anymore." 1 time. I had been saying it for months to myself, and my very young, wise daughter said it only once.
In March of 2008, we moved back home to our family and friends. Kayla's cancer is still in remission, as of November 18, 2008. Every 3 months we go back to Children's Hospital in Seattle for checks, each time hoping that we will receive good news and are able to come back to Alaska after just a few days. Kayla is on the swim team, busy with Girl Scouts, and just being a kid. Every day I am thankful that my daughter is still with us, and every day I think about the fact that this horrible disease called cancer may return. It doesn't stop us from living, but it has defintely changed our lives.