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Coping Tips for Parents

Throughout your child's illness, you'll be focused on comforting your child and helping him or her cooperate with treatment. You may also need to explain what's happening to your other children, answer relatives' questions and perhaps make alternate arrangements for work and childcare. All along the way, you'll be coming to terms with your own feelings and choices.

AJ

On December 23, 2018, our lives changed forever. And sadly, it was just the beginning.

I was assigned to work a night shift an hour away from where I dropped my son, AJ, off at my sister’s. I got a call from her two hours later. She said AJ was not feeling or looking well. My sister, Kyesha, took him to the emergency room.

I rushed out, put my emergency lights on, and drove an hour to the hospital. When I got there and saw my son, I didn’t know what to think or say. Tears started rolling down my face. AJ looked almost dead; his color was so blue.

Treatment

It's important that your doctor is experienced in treating patients with myeloma or works in consultation with a myeloma specialist. This type of specialist is usually called a hematologist oncologist.

Your treatment may include one or more of the following therapies:

Finding a Clinical Trial

If you're interested in the possibility of a clinical trial as a treatment option, talk with your doctor first. He or she can help you find an eligible trial.

Communicating With Your Partner

Discussing experiences, feelings and concerns with your partner(s)—giving each other the chance to talk and listen—is an important part of maintaining or improving your quality of life. Your partner may have his or her own concerns, such as being afraid of hurting you during sex, feeling guilty or selfish for wanting to be intimate with you or not knowing how to talk about their feelings. You may also want to talk about seeking help from a professional, such as a couples counselor or sex therapist.

Diet Guidelines For Immunosuppressed Patients

Food safety is important during and after cancer treatments. The immune system is often weakened by cancer treatments, making the body more susceptible to foodborne illnesses.

Neutropenia is a condition where you have lower-than-normal levels of neutrophils (a type of white cell). If you have neutropenia, following food safety guidelines are especially important. Be sure to follow all food handling guidelines to help protect you from bacteria and other harmful organisms found in some mishandled food and beverages.

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.

Thomas

My name is Thomas, and I was diagnosed with stage 2 Hodgkin lymphoma (HL) two weeks after my 30th birthday. Nobody wants to hear the words, "You have cancer," and even though my wife had some suspicions due to my recent weight loss and lower energy levels, it still came as a shock to both of us. The news hit hard, especially since all other aspects of my life were going extremely well. My wife and I had just moved to a new state earlier in the year, I received a promotion at work, we had just returned from a business trip out of state, and overall, things seemed to be going our way.

Will

I am a cancer mom. I WAS a cancer mom. My youngest son, Will, was diagnosed with Hodgkin lymphoma (HL) at age 19 in April of 2019. He, his dad, and I were beyond shocked when we heard the news that the swollen lymph nodes that came up out of the blue one March morning were indeed HL. We didn't really know anybody personally that had it. We didn't know what exactly all the words meant at that moment in time, but we knew it wasn't what we had planned for our youngest son.

Rylie

My name is Rylie York, I am 20 years old and I'm currently a sophomore at Baylor University. I'm originally from Round Rock, Texas and I am a patient at Texas Children's Hospital in Houston, Texas. I was diagnosed with stage 4 Hodgkin’s lymphoma at 18 in the middle of my senior year of high school. I have relapsed twice since then and completed my bone marrow transplant this past August and September.

Jimmy

My journey with The Leukemia & Lymphoma Society (LLS) began in the summer of 2020. My 17-year-old, two-sport athlete son Jimmy came to me complaining that he had pulled a muscle in his neck lifting weights for football and baseball. However, after many doctors’ appointments and tests, on June 12, 2020, in the middle of a pandemic, I received a call that his biopsy was indeed cancer, stage 3 advanced Hodgkin lymphoma (HL). I now had to tell my 17-year-old son that his worst fear was now a reality.

Elisa

I was diagnosed with stage IV Hodgkin lymphoma (HL) in April 2022 at 27 years old. After months of debilitating symptoms and a week-long hospital stay, I finally had an answer as to what was going on with my body. I was relieved to have an answer, but "cancer" was the last thing I expected. Ironically, after my diagnosis and first chemotherapy infusion, I felt better than I had in months. I didn't feel like I had cancer; the only reminders were a few enlarged lymph nodes and the mediport protruding from the right side of my chest. 

Caring for Your Child During Treatment

The following changes to your home may make life easier and safer for you and your child:

Diagnosis

While certain signs and symptoms may indicate that a person has MF, a series of tests are needed to confirm the diagnosis. It is important to have an accurate diagnosis, as it helps the doctor to:

• Estimate how the disease will progress
• Determine the appropriate treatment

Some of these tests may be repeated both during and after treatment to evaluate the effectiveness of treatment.

Healthy Eating

People living with cancer may have different nutrition goals and challenges, depending on their:

Nicholas

It started with a stiff neck. Then came fatigue and a sore throat. I started feeling full after only a few bites of food. Workouts were getting more difficult to complete. My heart rate was consistently north of 100 just lying in bed. Rationalized. It's maybe strep. Could be mono. I prescribed myself antibiotics and popped ibuprofen. Nothing was working. Reluctantly went to an urgent care after weeks of feeling like this. Bloodwork was done.

Myeloma Staging

Doctors use imaging and laboratory test results and bone marrow examination findings to determine the extent of disease. This determination is called “staging.” Staging helps your doctor predict the myeloma's progression and develop a treatment plan.

Stem Cell Transplantation with High-Dose Chemotherapy

High-dose chemotherapy and stem cell transplantation are important parts of treatment plans for eligible, recently diagnosed myeloma patients. One of the following types of transplants may be used:

Are Clinical Trials Safe?

U.S. clinical trials are designed to give patients the safest, potentially most effective clinical therapies. Clinical trials are conducted once researchers have shown in the laboratory and in animal research that a particular study treatment has a good chance of offering better outcomes for people with a specific disease.

Patients enrolled in cancer clinical trials are never treated as “guinea pigs.” In fact, patients are given either

Peripheral Neuropathy

Cancer treatment, or sometimes the disease itself, can cause peripheral neuropathy (PN) — damage to nerves of the peripheral nervous system, which transmits information from the brain and spinal cord to every other part of the body. Peripheral neuropathy can be caused by:

Choosing a Treatment Center

Selecting a cancer treatment center may depend on several factors including your specific diagnosis, location and insurance coverage. You will want to choose an accredited treatment center with the medical expertise to provide the type(s) of treatment you will need.

Long-Term and Late Effects For Cancer Survivors

Blood cancer survivors don't always have serious long-term or late effects of treatment. For those who do, some long-term effects, such as fatigue, can linger for months or years after therapy. Late effects, such as medical conditions like heart disease and other cancers, don't appear until years after treatment ends. Effects can range from mild to severe.

Talk with your doctor about possible long-term and late effects. Your risk for developing long-term or late effects can be influenced by your:

Home Care

You don't necessarily need to depend on inpatient medical facilities to meet all your healthcare needs. If your condition allows, you can get the quality care you need at home and avoid the inconveniences of hospitals, nursing homes and rehabilitation facilities.

Joshua

Just three days after Christmas, my world was turned upside down. I was admitted to the hospital because I was unable to keep any food down and felt terrible overall. Upon admission, I had a multitude of issues, just a few being extremely high uric acid levels, severe dehydration, pancreatitis, and nephrosis. They also discovered that I had lost 20 lbs.! Later in the hospital, I would lose 20 more. I remained in excruciating pain for three weeks while multiple branches of the hospital were trying to find out what was wrong with me.

Tricia

My story is truly about the little family that could. In 2002, I felt I had it all: a loving partner, a new job offer, and plans to start a family. Upon my return from a business trip in May, that feeling shifted as a large lump appeared on the side of my neck. Several doctor visits, tests, and sleepless nights later, I received a phone call on the way to a meeting from a doctor. He asked me to pull the car over. He told me I had cancer. Everything stopped.