On September 21, 2010, Penelope was diagnosed with Acute Lymphoblastic Leukemia (ALL) at the age of three years. Around her third birthday she started to develop lumps on her neck that would not go away and were growing larger every day. We took her to the doctor for blood tests on September 20. On September 21, our whole world changed. We were told by her pediatrician to come over immediately because the test results were back and they found something. That something turned out to be Leukemia. We were told to go to the ER at NY Presbyterian-Weill Cornell to begin treatment and further testing right away. As we left her doctor's office, we knew we were no longer the people that walked into the office just 30 minutes before. We had just turned down an entire new and unknown road, and it was not the road we had planned to go down. This was her whole new world, and it was a world that she had very little control in. Even though treatments began that night, we did not fully believe she had cancer. There was no time to process any of the information we had just been given. Every doctor we met, we asked, "Are you sure? Is there another test you could do?" On September 22, after sleeping in the ICU, we were walked over to the Memorial Sloan Kettering Cancer Center by, who would turn out to be, Penelope's oncology doctors. We met with the doctors and nurse practitioner, she was given a central line placed in her chest for medicine and blood tests ("Tubies" as Penelope will later call them), she had a bone marrow and spinal aspiration, and her first round of chemotherapy all in less then 24 hours of being given this devastating news. We still did not believe it and were waiting to be told, "Oops we made a mistake. It looked bad, but she is good. Just some virus she caught."
Her diagnosis became worse when, after a week of treatments and further testing on her blood, it was determined that she had Hypodiploid ALL. This type of ALL has a higher rate of relapse and lower chance of survival than standard ALL. She was immediately put on a more aggressive chemotherapy treatment than what is normally required for the standard ALL treatment. We were also told that she would need a bone marrow transplant and the search for a donor began right away. Our whole immediate family was tested, and unfortunately, no one was a match. Luckily, a search of the National Donor Bone Marrow Registry turned up two potential matches, one 8 out of 10 and one 9 out of 10 match. After a few weeks we were informed that after further testing her doctors felt confident that the 9 out of 10 match would be a good match for Penelope. (For more on Penelope's donor, see Lauren's Story).
Meanwhile, we continued to nod our heads, sign our names to releases for more scans and more chemotherapy treatments and releases for more bone marrow and spinal aspirations. Our life became about protocols, steroid weeks, morning, afternoon and night medications, and preparjng for the bone marrow transplant. Medications were a struggle at first and the behavioral charts began. We bribed Penelope with stickers and toys, we hid medications in applesauce, and we snuck into her room at night to put liquid medication on her thumb because she was a thumb sucker. We cried, screamed and fought daily over medication, but we were not allowed to quit. We quickly began to learn the best way to get her to take her meds. Our wonderful local pharmacist helped us find medications that came in tabs that would melt on her tongue and, after she learned to swallow pills, he would compound some of her medications in the exact dose in small capsules.
Even though the times were tough and we longed for life to be normal again, some of our greatest moments were spent together during this period. We learned to make the best best of bad situation. We would often just sit together or play dress up and have tea parties. When Penelope felt good, we danced and laughed. When she felt her worst, we snuggled and held each other. We were together. It was hard watching Penelope miss out on "regular" kid stuff, like pumpkin picking, going to the movies, playing with friends, going to birthday parties, and spending the holidays with her family. She spent over a year isolated from everything she knew
Sometimes, we still find ourselves wanting to get back to normal. Penelope's Odyssey was started out of that sense of longing for normalcy. We will never be able to change the unfortunate path that children with cancer and their families are on. However, we want to help bring fun activities and joy back into their lives.
Finally, Penelope's Odyssey is named for Penelope's life-changing journey from being a patient to being a survivor. Our journey has not ended here. We are dedicated to raising awareness for pediatric cancers, advocating for patients in need, and supporting local organizations dedicated to making a difference in the lives of the children and families impacted by pediatric cancer. Penelope is one of the many warriors who bravely battles pediatric cancers everyday. Penelope created our slogan, "Braveness and Kindness."