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Moving Forward: 4 Young Blood Cancer Survivors Look Ahead
Blood cancer survivors have a unique path ahead of them—and that can feel challenging.
Questions come up: Does treatment mean I have to pause everything? Do I tell my friends or coworkers (and how)? With my medical bills, how can I afford the education I want?
Teresa
I was diagnosed in 2009 with chronic lymphocytic leukemia (CLL). Upon diagnosis, perhaps the greatest shock was becoming aware that I knew so little about cancer, so little about the medical system, and how one needs to go about a process of self-education regarding their disease.
My diagnosis occurred at the Simon Cancer Center, a part of the Indiana University Health System. I was fortunate to have a neighbor who is a nurse practitioner at this cancer center. She intervened when she found out that a routine shoulder MRI revealed multiple enlarged lymph nodes.
Heather
My name is Heather and I was diagnosed with acute myeloid leukemia (AML) +FLT3/ITD on December 14th, 2017. That morning I noticed I was extremely pale and I had large bruises over my body. My doctor ran blood work STAT and within an hour I knew my platelets were below 20 and I needed to rush to the ER. I was pretty near death at that time. I was in Disseminated Intravascular Coagulation (DIC), which has a pretty high mortality rate.
Cynthia
Cynthia was on a family vacation in 2015 when she began experiencing back pain so severe that she had to be in a wheelchair for the rest of the trip. When she returned home, Cynthia went to see her doctor who referred her to an oncologist. After several tests, Cynthia was diagnosed with multiple myeloma. She was devastated. Chemotherapy and radiation soon followed, along with horrible side effects, sleepless nights and countless blood transfusions. But Cynthia was not going to let cancer defeat her.
Louise
During the last week of July 2019, Louise, then-two-and-a-half-year-old, developed unusual red dots on her chest and some gnarly, yet explainable, bruises all over her body. We chalked the rash up to wearing an unwashed shirt and the bruises to being an extremely active two-year-old. Then, after her gums bled one afternoon, we hopped on Google and became increasingly concerned with the search results. However, Louise wasn’t acting “sick,” so her parents ignored Dr. Google’s diagnosis.
Jennifer
Jennifer of Hayward, CA, was diagnosed with myeloma (MM) in 2008. During this process, she endured a year of intense chemotherapy, followed by an autologous stem cell transplant where her own stem cells were harvested and reintroduced into her body on January 8, 2010. This resulted in an extended hospital stay followed by radiation treatments. She is currently in remission and remains under doctor’s care. After her diagnosis and treatments, she wanted to give back to others living with the disease.
Jack
Jack is a particularly big fan of the Leukemia & Lymphoma Society. His is an active Patient Advocate managing a local support group for patients and caregivers interested in his rare blood cancer, he participates in LLS' First Connection program, has helped with LLS' Team in Training and Light the Night recruiting efforts. He received LLS' appreciation award "For Outstanding Commitment and Support of Advocacy and Patient Quality of Life" in June 2104.
Alayna
September 8, 2021: I didn’t know it at the time, but the mass I found in my neck the night before I started my senior year of high school would forever change my life.
Clinical Trials and Insurance Issues
Once you've identified a clinical trial you may want to join, you'll need to consider how your care will be paid for. Insurance coverage for clinical trials varies depending on the treatment, the insurance company and the health insurance policy. The study sponsor may cover some of the clinical trial costs. Most studies provide the drug or treatment free of charge. Other costs may or may not be covered by health insurance plans.
Dustin
December 3, 2016, was the date that I was supposed to get married to KT. It was a Saturday. We had that date set for over a year, but there was no wedding—we canceled it the Tuesday before. KT informed most of our guests with an explanatory text: “So, I have some unfortunate news. We’re going to have to call off the wedding this weekend. Dust got cold feet…and leukemia.”
Erica
Erica was diagnosed with potentially fatal Stage 4 Hodgkin Lymphoma on March 28, 2013. Her journey to survive her battle with cancer was very trying but after overcoming her obstacles, Erica is very passionate about inspiring people to have the d’zire to survive any challenges that they may face in their lives. Erica’s fight to survive lymphoma had its highs and its lows, however, she didn’t give up even when at times her battle seemed like it wasn’t getting any easier.
Leo
Five-year-old Leo was diagnosed with T-cell acute lymphoblastic leukemia (T-ALL) in June 2019. His parents had noticed bruising on his legs, petechiae around his eyes, fatigue, and shortness of breath, but because the symptoms didn’t present all at once, they didn’t think it was anything serious. Thankfully, on a Friday afternoon, Leo was due for a check-up where the nurse noticed the bruising on his legs and ordered a blood test.
From Office to Andes: LLS CFO Takes the Mission to New Heights
JR Miller at Palomani Pass, the highest point on the Ausangate trek in Peru at 5,200 meters (17,060 feet)
After 25 years of service to The Leukemia & Lymphoma Society (LLS), JR Miller has seen the mission from nearly every angle – donor, volunteer, fundraiser, advocate, and executive. But this year, he added something new to that list: trekker.
Austin
Four were spoken that day. Four crushing, breathtaking words, “Your son has cancer.” My world, my life, and my dreams for my son’s future suddenly halted while the rest of the world kept going on around us on May 14, 2011. Only days before, I was deciding what theme to have for his third birthday party and what outfit he would wear for his pictures. Days later, my husband and I were signing consents for the specific protocol of poison that would be pumped into Austin and having to digest the laundry list of possible side effects.
Kent
When Noah was born in 2005, we were surprised when the doctor told us he had Down syndrome. Soon after, we were informed about all of the things that Noah wouldn’t or couldn’t do in his lifetime. We were also given a laundry list of medical problems that he could potentially have. Two months after he was born, Noah went into heart failure and had open heart surgery to correct four holes in his heart. This was a tough time but boy did we have more to come and didn’t know it. He has since had multiple surgeries, tests, studies, etc. We were told that Noa
Nicolas
My name is Nicolas and I am 14 years old. Before my diagnosis I was a completely healthy child, in fact I was rarely ever sick. I played baseball, had straight A’s, and recently had recently got a new puppy. This sense of normalcy came to a screeching halt on January 13, 2018. That’s the day I was admitted into the pediatric ICU and the day I first heard the words, “you have cancer.” My family and I were devastated.
Chloe
At the age of 13, I became the youngest stem cell donor at Johns Hopkins Hospital. At 15, I am a Student Visionary of the Year in the 2024 Leukemia and Lymphoma Society (LLS) campaign. LLS has become an integral part of my life over the past two years. In the spring of 2022, the peaceful life of our family was shattered by my mom’s diagnosis of acute myeloid leukemia (AML). Learning that a stem cell transplant was the only cure, I volunteered to donate my bone marrow to her.
Jelien
Jelien started showing signs in early July of 2018. She had bruises and cuts that were taking too long to heal. In November, she kept spiking fevers with no other symptoms, and the doctor suggested giving her Motrin and switching to Tylenol. In December, during her well visit, Jelien’s bloodwork came back with slightly low counts, but her hemoglobin was too low. She was admitted to the hospital for a day for observation, and her counts were recovering. She had a follow-up and was cleared.
Elissa
Ten years ago, my mother-in-law was diagnosed with stage 4 non-Hodgkin lymphoma (NHL). She has since been deemed cured and has had no recurrence since her successful treatment. Some of her medicines were funded by The Leukemia & Lymphoma Society (LLS). We spent years racing for Team In Training (TNT) to fundraise for LLS.
Justin
In March 2012, when Justin was in the sixth grade, he started to rapidly lose weight, was experiencing extreme exhaustion and night sweats. After multiple visits to the doctor but no answers, his parents finally took him to the hospital for more intensive testing, including a bone marrow biopsy. One day later they received the shocking diagnosis: acute lymphoblastic leukemia.
Holly
It felt just like any other Saturday after my dad's birthday. He got his annual checkup and bloodwork, and we would all celebrate our April birthdays around Easter Sunday. But this turned into something unlike any other Saturday. His cell phone rang, and everything changed. He was told to go to the ER immediately because something was wrong with his bloodwork, specifically his red and white blood cells.It could have been the shock of feeling everything all at once and being numb simultaneously.