The director of our Leukemia & Lymphoma Society called today. She asked if Chelsea could be their honored hero for the 2009 Light the Night Walk! I told her I'd have to talk it over with Ryan. Just kidding, of course I said yes! Thank goodness Ryan is easy going about our families adventures!
They haven't set the date yet, but you'll be the first to know! If you didn't walk with us last year, I hope you can join us for our 2009 walk!
I wanted to share with you the letter we are sending to our neighbors in our neighborhood drive. It was emotional writing this as we approach the one year date of Chelsea's diagnosis.
Dear Neighbor,
I wanted to take this opportunity to share with you a very personal story. You may be surprised to learn the trials we have been through this past year, but I hope our story touches your heart. Blood cancer happens to people of all ages, races and cultures. You never know when it will happen to someone you know.
One year ago, we received a phone call from our daughter’s pediatrician that would change our lives forever. With his four words, “we need to talk,” I knew something was terribly wrong. I had taken her to his office the day before, as she hadn’t been acting much like herself. She had just learned to walk and was stumbling more than normal, she had been running a low-grade fever, and was sleeping a lot. Along with her falls came bruises on her legs, back and face.
I called my husband to have him meet me at the doctor’s office, “Chelsea has leukemia,” I told him. He told me not to jump to conclusions, but I knew in the pit of my stomach, it was blood cancer. I knew nothing more.
The doctor confirmed her blood tests showed telltale signs of leukemia; extremely low platelets, and a high percentage of blast (cancer) cells. I knew nothing about where we would go from there. I had no idea what leukemia was, what causes it, or if we could get rid of it. The doctor told us to go to Children’s Mercy, so we did.
The next few days was a blur of new faces, doctors, nurses, social workers, surgeons, and a jumble of new medical terminology we had to quickly learn. I furiously took notes, asked questions, and watched helplessly as they poked, examined and tested my baby girl. An early bone marrow aspiration, in which they sedated her and removed red marrow from her hipbone just above her buttocks, showed she had the more aggressive form of leukemia, Acute Myeloid Leukemia (AML).
We were blessed that her chances of survival were high, but because of the aggressive nature of her cancer the treatment would prove traitorous. One of the leading causes of death for AML patients like Chelsea is due to side effects from the chemo. We knew the treatments would be difficult, but it was particularly hard to hear that even when the chemotherapy was finished, we would be far from done. Many children with AML die from the toxicity of the chemotherapy drugs. Her heart in particular was one of the major organs in danger of being seriously damaged, and a heart transplant was something we wanted to avoid in the future.
Because of advanced research, Chelsea had the opportunity to participate in a study regimen of chemotherapy that would reduce the toxicity and in turn, perhaps, increase her chances for survival. While we were still struggling to understand her leukemia, we were faced with making this important decision; do we participate in a study regimen or do we follow the standard protocol for children like Chelsea? We didn’t have much time to think, we had to decide, and we had to begin treatment immediately.
Without looking back, we decided to go forward with the study protocol. Determined to do what was best for Chelsea, we felt good about participating and helping other children who would later be diagnosed with AML. Hours after signing the consent forms, she began the first of six grueling rounds of chemotherapy. Each one knocked out her bad cancer cells as well as her good infection fighting cells. Basically each time she received a round of chemotherapy she would be left defenseless against minor cuts or scratches, the flu, and even the common cold. Each round was different, but most ran nonstop into her veins from 4 to 8 days straight.
While each treatment plagued her with the typical side effects: nausea, lethargy, mouth sores and hair loss, her tender hearted spunky personality prevailed. She remained happy throughout, and battled the cancer like a true fighter. Over her 9 months of active treatment, we spent 157 days in the hospital. Looking back, it was a small price to pay for something we often take for granted, life.
Chelsea is now in remission and returns to the hospital for monthly blood work and a thorough exam. She will continue to be monitored closely into adulthood, but we are hopeful that the side effects she faces in the future will be minor and easily corrected because of her participation in the research study protocol. Please consider donating to the Leukemia and Lymphoma Society in honor of our sweet Chelsea. Cancer doesn’t discriminate. Chelsea could be your grandchild, your daughter, your sister, or your neighbor. Thank you for helping to save lives. I know the families who will face similar cancers in the future also thank you.
You can donate via our team page, team Dream Big. This is also the page for local family and friends to join our team, we would love to have you walk with us, all of us. I can't wait to see Chelsea walking as a survivor!
