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Charlie

At two and a half years old, Charlie was diagnosed with acute lymphoblastic leukemia (ALL).

Soon after being diagnosed, she underwent surgery to insert a port-a-cath so she could receive chemotherapy treatments and make route blood work easier on her. Chemotherapy treatments were extremely hard on her little body and she refused to walk. She had neuropathy from the treatments.

Nandini

Everything was picture perfect in my life. A beautiful family with two beautiful daughters and husband. And then, in March 2009, I was diagnosed with acute myeloid leukemia (AML).

I had been recovering from aplastic anemia since 2002. However, AA progressed into AML. A transplant was the best cure available and a kind unrelated donor was found who gave a new lease to my life. After a painful bone marrow transplant recovery, I am now in remission. My older daughter just went to college and my younger daughter is in fourth grade.

Follow-Up Care

Your child will undergo frequent follow-up tests during the first year after treatment, but they will be done less often during the second and third years. Each patient has a different follow-up care schedule. How often your child has follow-up visits is based on your child’s type of AML and the treatments given. Your child’s doctor will let you know the schedule that is right for your child.

Children should visit their pediatrician or doctor at least once a year for a complete physical exam and any additional needed tests. The oncologist should also regularly examine the child.

Essential Thrombocythemia

• Is a rare blood disease in which the bone marrow produces too many platelets. High numbers of platelets may lead to a thrombus, a blood clot that forms in a blood vessel.

Makenzie

My daughter Makenzie was diagnosed with chronic myeloid leukemia (CML) in January 2013, when she was just four years old. She had no signs or symptoms of leukemia. One day, Makenzie had a sore throat and we made an appointment with her pediatrician. Turns out she did have strep throat, but an exam also revealed her spleen was very enlarged. At that point, her pediatrician did bloodwork and learned that Makenzie's white cell count was through the roof. We were sent to Texas Children’s Hospital where later that evening she was diagnosed with CML.

Supportive Care and Disease Complications

Supportive (palliative) care for myeloma helps manage the complications of the disease and the adverse side effects of the drugs used for treatment, including: 

Reduced-Intensity Allogeneic Stem Cell Transplantation

Reduced-intensity allogeneic stem cell transplantation (sometimes called mini-transplant or nonmyeloablative transplant), like a standard allogeneic stem cell transplantation, uses stem cells from a donor, but the conditioning treatment contains lower, less toxic doses of chemotherapy and radiation. This type of SCT may be an option for certain patients who are older or who are otherwise not healthy enough or strong enough to undergo standard allogeneic SCT.

Stem Cell Transplantation

Blood stem cells are produced in the marrow of the bones and can become any kind of blood cell the body needs. Stem cells are constantly dividing and maturing into different types of blood cells, replacing older and worn-out blood cells in the body. They produce billions of new blood cells every day. If the stem cells cannot make enough new blood cells, many serious health problems can occur. These problems may include infections, anemia or bleeding.

Amanda

My name is Amanda, and I am a stage 4b classical multicellularity Hodgkin lymphoma (CHL) survivor. It all started after spring break of my junior year of high school. I was on a ski trip when I noticed my feet were more itchy than normal. I figured it was from the boots. After coming home and realizing it had gotten worse, we went to the pediatrician. She looked at the bruises and scratch marks on my legs and diagnosed me with scabies. I did the whole treatment for that, and obviously, it didn’t work. A week or two later. we went back and had some basic bloodwork done.

Paige

On September 8, 2020, my youngest baby Paige was diagnosed with high-risk B-cell acute lymphoblastic leukemia (HR B-cell ALL) at Children's National Medical Center in Washington D.C. This diagnosis came after two weeks of visually noticing a change in Paige's behavior. By that point, she had been suffering from a high fever (102-104°) for two weeks after being misdiagnosed by Patient First Urgent Care. She had extreme fatigue, complaints of sore muscles, and literally not wanting to do anything. But this discovery happened by chance.

James

My symptoms began in May 2017. I was having shortness of breath while climbing stairs and jogging up even the smallest of inclines. I chalked my windedness to age; I was fifty-seven. And I told myself that I was tired after teaching a hectic school year.

Myeloma Overview

We provide education and outreach programs nationwide to increase awareness of myeloma and to improve all patients’ ability to access treatment and other resources.  We are in the process of updating and enhancing our Myeloma Link webpage to provide you with more information about these programs.

Myeloma is a cancer of plasma cells, a type of white blood cell. Plasma cells develop from B lymphocytes (B cells). B cells are found in the blood, lymph nodes and bone marrow.

Art

I was living in San Jose and had gone walking with a friend in a local park that followed the stream. It was December 15, 2006. Tom noticed that I had difficulty climbing up the five-foot stream embankment that the path went through. I myself didn’t recall this. Ten days later while visiting my wife’s children in Fairfax, the children and I went on a trail as we always did on Christmas morning. I found myself badly winded and returned to their home while they continued the hike. Then I noticed that I was not attracted to the Christmas feast.

Paul & Lynn

In 2017, after 44 years of working in the railroad industry, Paul Sauter was just starting to enjoy his retirement, when his health started to decline out of nowhere. Typically, he was in extremely good shape and enjoyed long hikes with his wife, Lynn. One day, while on a mountain climb trip in Arizona, Lynn was concerned when she noticed Paul was not his usual athletic self. When he was unable to get out of bed because of severe back pain, she knew something wasn’t right.

Treatment

The main treatment for AML is chemotherapy given in phases.

Not every child with AML receives the same treatment. Your child’s doctor will tailor your child’s treatment based on the AML subtype and other factors, such as age, health and how the cancer responds to treatment.

Your child’s treatment may include:

Jason T.

My name is Jason T. Quimby and I am the proud past caregiver of my wife and ALL survivor Susana Moro. In November 2016, my wife, was diagnosed ALL leukemia ph+ and admitted to the Miami Cancer Institute South Miami Campus to start her pediatric chemo protocol. Needless to say that for a forty-something mother of three teenage girls this was a huge personal and family challenge to overcome.

Side Effects

Cancer therapy for non-Hodgkin lymphoma (NHL) can sometimes produce side effects. For most patients, treatment side effects are temporary and go away once therapy ends. For other patients, side effects can be more severe, sometimes requiring hospitalization. Some patients never have side effects.

Before you undergo treatment, talk with your doctor about potential side effects. In recent years, new drugs and other therapies have increased the ability to control side effects.

FDA Approves First Drug for The Prevention of Acute Graft Versus Host Disease

Grace

Volunteering for an organization was part of my senior capstone in the Spring of 2021. I wanted to volunteer for an organization that was for the long term and meaningful to me. One of my best friends, who is also my cousin, was diagnosed with acute myeloid leukemia (AML) in 2020. I felt so helpless and also didn't know anything about AML, so I turned to LLS to educate myself. LLS is an integral factor and I wanted to do my part. I became a story volunteer, where I had the opportunity to interview and speak with other volunteers and supporters.

Ryan

I am a cancer and bone marrow transplant survivor. In June 2013, at the end of my eighth grade, I was diagnosed with acute myeloid leukemia (AML). On top of that, it was the worst subtype of AML and my outlook was considered very grim.

Radiation Therapy

Radiation therapy, also known as “radiotherapy,” uses high energy x-rays or other types of radiation to kill cancer cells. While most blood cancers cannot be cured with radiation therapy alone, it may be combined other treatments such as chemotherapy, immunotherapy and stem cell transplantation. Radiation therapy may also be used to relieve symptoms of blood cancer and improve quality of life. For example, radiation therapy may be used to shrink an enlarged spleen, liver or lymph nodes. It may also be used to manage bone pain caused by cancer cells growing in the bone marrow. 

Teri

I was first diagnosed with a myeloproliferative neoplasm (MPN) called polycythemia vera (PV) in 2012. I must admit, I was a bit overwhelmed when they said the “C” (cancer) word and then the “R” (rare) word. I have been living with a handful of rare diseases for some time and now a rare cancer. At that time, there was limited information. I started to research MPNs, attended some conferences, talked with a social worker (Amy is my hero) at The Leukemia & Lymphoma Society (LLS), and connected with the MPN Research Foundation and MPN Advocacy Foundation.

Hodgkin Lymphoma

• Is a cancer that affects the lymphatic system, which is part of the body's immune system
• Is one of the most curable forms of cancer
• Is named for Dr. Thomas Hodgkin who, in 1832, described several cases of people with symptoms of a cancer involving the lymph nodes. The disease was called "Hodgkin's disease" until it was officially renamed "Hodgkin lymphoma" in the late 20th century.

Click here to access Hodgkin lymphoma statistics.

Diagnosis

Diagnosing hairy cell leukemia usually involves a series of tests, including blood tests and bone marrow tests.

Samantha

Hi, I’m Samantha, and I am a pre-B-cell acute lymphoblastic leukemia survivor (B-ALL)! I was diagnosed in October 2018, the beginning of my junior year in high school. Before being diagnosed, I missed about a month of school due to being sick. I was misdiagnosed three times before they found out I had B-ALL. When I was diagnosed, the doctors told my parents and me that if it had been undiagnosed for a day or two more, I wouldn’t have woken up, and my parents would’ve found me. I’m so lucky it was found before it was too late.