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Childhood and Young Adult Resources
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Resources for Children, Young Adults and ParentsOne-on-One Support
Alec
I am a caregiver and girlfriend to Alec Bishop. A strong and courageous man that has been fighting primary mediastinal B-cell lymphoma for over a year and a half. He was diagnosed in August 2017 with a softball-sized tumor pressing on his superior Vena Cava. He went through 6 cycles of R-CHOP chemotherapy only to relapse with a new tumor a month after his last cycle of chemo.
Amanda
Amanda was a Woman of the Year candidate this past spring, raising over $186,000 for The Leukemia & Lymphoma Society (LLS).
She is a multiple myeloma (MM) survivor and just received the newly approved for MM, CAR-T cell treatment, 5 days before the fundraising campaign finale.
LLS first met Amanda when she was pushed through the front doors of the office in her local region, in a wheelchair.
Clinical Trials
Taking part in a clinical trial may be the best treatment choice for some chronic lymphocytic leukemia (CLL) patients. Clinical trials are under way to improve remission rates for CLL. Today's standard treatments for cancer are based on earlier clinical trials. The Leukemia & Lymphoma Society continues to invest funds in CLL research.
Click here to read more about clinical trials.
Jeanne
After initial chemo and radiation for stage 4 diffuse large B-cell lymphoma (DLBCL), I went into remission for 10 months. I had more chemo but couldn't tolerate it. CAR T-cell therapy seemed to be my best option. I received Yescarta® in March 2022. I was in the hospital for three weeks. I had some side effects, but they were treated immediately and resolved. I have been in remission for 19 months. I have had some residual effects ― low white blood cells which are slowly increasing, low hemoglobin which has finally come up to normal, and low immunoglobulin.
Jude
From 2013 to 2014, after he was diagnosed with acute lymphoblastic leukemia (ALL), Jude endured four cycles of intense chemotherapy, lengthy hospitalizations, difficult side effects, and months of home isolation. Jude's younger brother, Finn, was born in May 2014 in the middle of Jude's chemotherapy cycle. In August 2014, his family finally celebrated as Jude finished the more difficult part of treatment.
Because You Volunteer, Your Impact Creates a Ripple Effect
When you commit time and talent to a nonprofit’s mission – no matter how you choose to get involved – you become a volunteer, and the impact of your efforts runs far deeper than the specific project or task you work on. For example, volunteers don’t always realize that the hours they spent stocking shelves meant hundreds of families would have food for two weeks. Or that the time spent fundraising not only raised critical mission dollars but also added value upward of $1,250 to the organization’s bottom line.
Adam
My wife left me after 33½ years of marriage (37½ including dating) and 2½ years into my remission. I read stories about a spouse, usually a male for some reason, who up and left his partner either during active treatment or when everything looked like the patient, the person, would live, but I never thought any of that would happen to me, and it sure as heck did. She fell out of love with me, with caring for me, with helping me. I may have been an ass, but I wasn't an asshole ― you know what I mean? She probably feels she didn't deserve any of this either, but . . .
Clinical Trials
Taking part in a clinical trial may be the best treatment choice for some myeloma patients. Clinical trials are under way to develop treatments that increase the remission rate of myeloma or cure the disease. Today's standard treatments for cancer are based on earlier clinical trials. The Leukemia & Lymphoma Society (LLS) continues to invest funds in myeloma research.
Lynn
I was diagnosed on Halloween 2008 with smoldering multiple myeloma (SMM). By 2011, I needed a stem cell transplant. After about a year and a half, I started on maintenance drugs. I started out with Velcade and progressed over the years to immunotherapy drugs.
I had very few side effects from these drugs and had remained strong and active, but everything started to catch up with me in 2021. I was deemed to be a good candidate for CAR-T-cell therapy, and in February of 2022, I was admitted for treatment.
Sarah
My husband Patrick had a chest cold for about two months. I finally convinced him to go to the urgent care and they did an X-ray. Soon they found that he had an abnormally shaped aorta, so they sent him to our primary for testing.
They tested him and on July 5, 2017 and found that he had a mass in his chest that had caused his heart to move. It turns out the mass was Hodgkin lymphoma.
Targeting cathepsin G in acute myeloid leukemia
We developed a chimeric antigen receptor (CAR) targeting an epitope of the myeloid associated antigen cathepsin G that is processed and presented in the contest of the MHC complex in myeloid leukemic cells. T cells expressing the cathepsin G specific CAR (CG1.CAR) recognize HLA-A2+ myeloid target cells expressing cathepsin G. We intend to study efficacy and safety of CG1.CAR-T cells in preclinical models in preparation of a phase I clinical study in patients with relapsed/refractory AML.
Austin
In May 2011, when Kimberly Schuetz was starting to plan her son Austin’s third birthday, he was diagnosed with a high-risk form of acute lymphoblastic leukemia.
Austin was immediately placed on a chemotherapy regimen. However, when a routine blood test revealed that he relapsed in October 2012, their only option was a bone marrow transplant to save his life. After that transplant, his cancer came back for the third time in May 2013.
Shaden
Shaden is fighting against leukemia. He is three years old and was a healthy boy before his diagnosis. Then, out of nowhere, he would get a lot of body aches that were very unusual.
Sometimes Shaden didn’t feel like being the happy, energetic kid he always was. He wouldn’t walk, sleep or eat. We decided to take Shaden to the children’s hospital and they did some testing. They soon told us that he might have leukemia. They did more testing, and Shaden was diagnosed with acute myeloid leukemia (AML).
Development of cellular therapy for CMML and the Immune landscape of response and resistance
We will test the efficacy of CAR T cell therapy for CMML. We will modify the tumor microenvironment to enhance their efficacy. and we will upscale CAR T cells to the next level in terms of their genetic structure.Treatment for Indolent NHL Subtypes
Indolent non-Hodgkin lymphoma (NHL) subtypes progress slowly. They make up about 40 percent of all NHL cases in the United States. Indolent subtypes include:
Relapsed and Refractory
Relapsed CLL is the term for disease that returns after it has been in remission for more than six months.
Refractory disease is the term for CLL that does not result in remission after initial therapy.
Nathaniel
Hi! Nathaniel here, but you can call me Nate. I am an 18-year-old North Carolina Scholar, 2015 graduate of Franklinton High School who graduated with high honors. I am a future student of the University of North Carolina at Charlotte, majoring in mechanical engineering. I am a son, brother, grandson, nephew, cousin, boyfriend, friend, percussionist, musician, scholarship recipient, car and truck enthusiast, minority mentor, and an all around "Renaissance Man" with a philanthropist heart. I also have cancer
Jack
Jack is an eight-year-old boy in second grade at Gayton Elementary School. He has a passion for all things sports, soccer being his favorite. He also plays baseball, basketball, participates in a swim team in the summer, and has recently taken up tennis. Jack also enjoys doing anything outside whether it’s riding bikes, shooting baskets, sailing, fishing or building forts with his twin sister, Ellie and younger brother, Landon. You won’t find him too far from a Lego set, and will whip up intricate cars, spaceships and villages in no time.
William
Hi, my name is William Yank and I am a 23-year-old, three-time leukemia survivor from Indiana. My story begins at the end of my junior year of college. I had just secured an internship in Washington D.C and was excited to finally spend a summer on my own. The summer started off pretty rough. I struggled to find affordable housing in D.C, I had no idea how the transportation system worked, and food was twice as expensive as compared to Indiana. Not to mention, I was only 20-years-old having fun was next to impossible.
Chemotherapy and Drug Therapy
Chemotherapy is the mainstay of treatment for HL. A combination chemotherapy regimen consists of two or more chemotherapy drugs. Generally, the drugs are dissolved in fluid and usually administered via a peripheral intravenous (IV) line. If finding an accessible vein is problematic, a central line (a port, or a peripherally inserted central venous catheter (a PICC or PIC line) may be used for some HL patients.
'Chemobrain'
Chemotherapy and radiation therapy can cause problems with cognitive (mental) functions, such as concentration, memory and the ability to multitask. Most chemotherapy patients experience these effects, sometimes referred to as “chemobrain” or brain fog, to some degree, although doctors are unable to predict who might be affected.
The cognitive effects of chemotherapy for some are long-lasting. A small percentage of patients have long-term effects known as "chemotherapy-induced cognitive impairment." The symptoms include a mental fogginess and effects on: