Friday, June 19, 2009

Kayla would be Connery's age...

I just realized how strange it is to say that a child would be two, or would be starting kindergarten, or would be losing her front teeth right about now. But whenever I think of Kayla, I think of how she would be the same age as my younger son. They were born 15 days apart. Kayla was diagnosed with cancer before she even turned 4 months old. Here is her story, in her mother Julie's words:
I took Kayla to the pediatrician for a check-up just before she turned 4 months old – 3 days before Christmas. Her pediatrician was concerned with the size and feeling of her liver so she sent us for further testing. Within 12 hours Kayla had enough testing to confirm that she had Neuroblastoma, a cancer of the nervous system. A CT scan showed that she had tumors all throughout her abdomen, into her liver and spots on her spine. I still remember being in that room when the doctor said “cancer” and in the room when my husband received the phone call with the CT scan results. I remember dropping to our knees for fear of our child’s life. We didn’t even know what cancer truly meant much less that it could attack our daughter, an innocent baby girl. Our world was forever changed that dreadful day. Kayla was admitted the day after Christmas for a biopsy procedure – the first procedure of thousands to come. This procedure was unsuccessful and she was left with a bleeding disorder that would threaten to take her life on several occasions over the next few days. After several blood transfusions and impending organ failure, she was transferred from Colorado Springs to The Children’s Hospital in Denver. It was a true miracle that she survived the next two weeks with complicated emergency trips to the operating room and an immune system that would not defend her from even the smallest of infections. She was left on a ventilator for over a month leaving her bed ridden with no possibilities of holding her, feeding her or even giving her a bath – small treasures that no mother should be denied. She was finally released from the hospital after several weeks of rehabilitation and further treatment. We were home, but the battle had truly just begun. Kayla would continue to receive chemotherapy throughout the summer. It was in July when she started to exhibit worsening symptoms. A CT scan would show that our worst fear had become reality. Kayla’s tumors had spread drastically into her lungs, her neck, her pelvis, her bones and bone marrow. Kayla had become a Stage 4 cancer patient at only 10 months old. She was immediately placed on a high risk chemotherapy protocol which would include several rounds of chemotherapy followed by surgery, a very dangerous bone marrow transplant, radiation therapy, and several other treatments.

Kayla started in on her new treatment plan like the true soldier that she had become. She was fearless when it came to big dogs, scary noises, strangers in the crowds … it was the nurses, the needles, the tests, scans and procedures that would often bring her to tears. Kayla fought so hard, but her cancer was merciless and became too aggressive for her body to fight with the available treatment options. Even after several rounds of chemotherapy, the tumors continued to spread, getting closer and closer to her heart. The tumors were non responsive to chemotherapy and there were just no options left. I was forced to hold her in my arms and let her pass to Heaven on December 2, 2007, feeling her skin on my lips one last time.

After Kayla's death, her parents started the Kayla Weber Believe Foundation to carry on the fight against childhood cancer. The Foundation seeks to raise awareness and fund research.

She was diagnosed with cancer three days before her first--and her only--Christmas.

Her father shaved his head through St. Baldrick's and got a tattoo from Kat Von D on his chest, where Kayla used to lay.

I often think of Kayla while I watch Connery growing. And when I read that she had passed away, the first thing I wanted to do was hug Connery. Tight.

I. Can't. Imagine.

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