DeeDee’s Story

For DeeDee, Chronic Lymphocytic Leukemia is a Family Affair. When her mother had Chronic Lymphocytic Leukemia (CLL), Deedee learned to read and understand lab results. When she received the same diagnosis years later, Deedee met with her pathologist to discuss her case and treatment.

DeeDee's life has been about helping others. She is the Executive Director of Ironstone Farm, a non-profit organization in Lowell, MA, that provides one of the largest equine therapy programs in the United States for people with disabilities and illnesses. She was the primary caretaker for her mother when she was diagnosed with Chronic Lymphocytic Leukemia (CLL), and she assumed care for her friend and business partner Richard Donovan as he experienced cognitive and physical deterioration. She became the public member of the Board of Governors at the Board of Certification at the American Society for Clinical Pathology in 2007. As it turned out, all these experiences helped inform her response for three life-altering diagnoses: renal cell carcinoma in 2007, a non-malignant meningioma brain tumor in 2009, and CLL in 2017.

Over the course of managing care for others and herself as well as volunteering for a laboratory medicine organization, DeeDee not only learned about the importance of laboratory results but the dedication of the people who provide them. While most people never come in contact with the laboratory professionals and pathologists that are responsible for their results, DeeDee is aware that these people work tirelessly behind closed doors to ensure accurate results and diagnoses that affect patient’s lives. During each of her diagnoses, she learned as much as possible about the disease, including asking questions about her laboratory results until she fully understood the answers. It’s her wish that the general public be educated in the role of the laboratory and its value in every aspect in healthcare. This education includes access to laboratory results as well as access to pathologists and tours of the laboratory.

Living with each of her diagnoses has given DeeDee clarity of purpose. Before, work consumed her life. While her work with Ironstone Farm is still an integral part of her life now, she recognizes the value of truly experiencing life. She takes the time to eat right and get enough sleep. She spends time with people she loves, she’s learning to dance, and she’s recently traveled to Israel and Italy. Her life is fuller than it’s ever been before.

While DeeDee wasn’t unsurprised by her Chronic Lymphocytic Leukemia diagnosis—her mother and brother had also battled the disease, and she was experiencing symptoms—the conversation felt surreal. Throughout her and her family’s illnesses, she learned to ask questions about laboratory results. Now she’s paying those lessons forward.

Alique’s Story

“As a blood cancer survivor, I live and breathe by my lab work. Many other cancer patients have scans. but I have labs.”

Alique first got sick when she was four years old. According to her mother, Alique experienced fatigue, energy loss, tiny red dots on her skin (called petechiae), bruising, and "the light in her eyes was gone." After a series of blood tests and a biopsy of her bone marrow, she was diagnosed with acute myeloid leukemia (AML).

Lab tests are essential to monitoring a blood disease, and even though she was young, her parents wanted her to understand what was happening inside of her body. Starting when she was 4 years old, her parents and doctors would explain her lab work so she could understand the progression of her cancer: “I would keep track of platelets in a big jar using cheerios as platelets, red M&Ms as my hemoglobin, and blue as my white blood cells. I think my family teaching me how to understand this from such a young age gave me autonomy of my illness throughout the course of my life.”

The first treatment doctors recommended was a bone marrow transplant, but there was no match available. After searching for months, her doctors and parents decided to enroll Alique in a clinical trial for a new treatment option. The treatment worked and Alique went into remission.

In 2020, 22 years after she went into remission, Alique fainted at work. She also began to develop terrible headaches and realized she was bruising more than usual. She went to her doctor, who was hesitant to think anything was out of the ordinary, but Alique advocated to get a complete blood count (CBC) with differential test to check the levels of her blood. When she got her results, she looked at them and thought, “My cancer is back. These look like leukemia test results.” The next day, Alique got a biopsy of her bone marrow. The sample was sent to a pathologist, who compared it to images of a biopsy taken when she was a child. The doctors were shocked that Alique had Acute Myeloid Leukemia again, since it had been so long since her initial diagnosis.

After being diagnosed the second time, Alique underwent a year of chemotherapy. During her treatment, her oncologist relied on the pathology team to provide insights to into what was happening in Alique’s body. Her lab results informed them if she needed blood or platelets and what level of immunocompromise she had. This access to information was a huge comfort to Alique during her treatment and continues to offer important insight into her health: “Even now getting my labs drawn just gives me a sigh of relief.”

Alique’s condition has stabilized, and she has been able to return to her life. She will receive smaller doses of chemotherapy for the next 3-5 years to manage her cancer.