Posted: November 28, 2016
5 Months Old at Diagnosis.
Ambrosia was born a chunky happy baby on May 2, 2012. When she was five months old in October 2012, my husband and I took her and her brother to our local zoo for their trick or treating. That’s when we first noticed something wasn’t quite right. Ambrosia was grunting with almost every breath she took. I attributed it to the sudden cold weather at first.
Three days later I took her to the pediatrician, as she hadn’t gotten any better. The pediatrician first diagnosed her with bronchiolitis. They checked her oxygen levels and put her on a breathing treatment. I took her back every couple of days for the doctor to recheck. By the ninth day, Ambrosia had suddenly gotten worse. The doctor took a blood sample and also checked her oxygen levels. He came back and said her white blood cell count was extremely high and he had called ahead to the local children’s hospital ER to let them know we were coming.
Once we arrived at the children’s hospital, they did a chest X-ray which showed fluid in her lungs. We were admitted to the PICU for pneumonia. Tests were ordered along with a CT scan. Considering Ambrosia had never run a fever, I guess that’s why they were so cautious. After waiting awhile for the results of the CT scan, the doctors took me and my husband out of the room. It was then we were told there was a tumor on Ambrosia’s liver and her lungs were also covered in tumors. It was the first time we heard the word cancer to describe what was happening with our daughter.
The next morning Ambrosia had surgery to drain the fluid from her lung and a biopsy on one of the tumors. It was confirmed that it was malignant and we were told we would have a complete pathology report within four days so treatment could begin. When the report came back it was worse than we could have imagined. Malignant rhabdoid tumor of the liver. A cancer so rare that there were probably less than 40 children diagnosed with it in the world at the time of Ambrosia’s diagnosis. Her doctors told us there was no known protocol that would save her life, but they would do everything they could to fight for her.
Immediately after diagnosis, a treatment plan was in place and chemotherapy was started. Soon after, Ambrosia’s other lung filled with fluid and she had to be intubated. She pulled through and the treatment seemed to be working. After four rounds of chemo, a CT scan showed the tumors were no longer responding to the treatment.
Ambrosia was started on a more aggressive chemo with the hopes the tumors would shrink this time. They did not. After searching worldwide for options, we chose to try a stem cell transplant with Ambrosia’s own stem cells. The hope was if it showed even a little improvement she would then have a bone marrow transplant, which had never been done for her kind of cancer.
We spent a month in the hospital. Ambrosia was on a pain pump because she cringed even being touched. It was hard to see her in so much pain when she was always so happy during treatments. At the end of her stem cell transplant a PET scan was done. Unfortunately, it showed Ambrosia’s tumors were still active even though growth had stopped.
There is nothing worse than going home knowing there are no options left for your child. Ambrosia was put on an experimental oral chemo. I searched on CureSearch’s website for rhabdoid tumors, something I had done before and not had any results. This time something did show up. A doctor was awarded a Young Investigators grant that was doing research on rhabdoid tumors. I emailed the doctor to see if Ambrosia could help his research. He talked to her doctors and had access to any research that was done on the tumor that was donated during her initial biopsy.
In June 2013, we had a wish trip to our local zoo with behind-the-scenes access to create some lasting memories for our family. It was the first day I knew we didn’t have much longer with Ambrosia. A few days later at her doctor’s appointment, along with a nurse from Hospice, Ambrosia was put on oxygen. An X-ray of her chest showed the tumors in her lungs had gotten so big it was pushing her heart to the right side of her chest. The doctor told me we didn’t have more than a week or two left with Ambrosia.
On June 22, 2013, with Ambrosia in my arms, I felt her heart stop beating. She was 13 months old. From that moment on I became a strong advocate for better treatment options and research for children with cancer. It’s why I became a supporter of CureSearch. So that other families will have better and safer treatment options for their children.
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