The Leukemia & Lymphoma Society
Rating: 3.03 stars 40 40 reviews 12,767
1311 Mamaroneck Avenue Suite 310 White Plains NY 10605 USA
The mission of The Leukemia & Lymphoma Society (LLS) is: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. LLS is the world's largest voluntary health agency dedicated to blood cancer. LLS funds lifesaving blood cancer research around the world and provides free information and support services. Our Key Priorities will ensure that: The Leukemia & Lymphoma Society helps blood cancer patients live better, longer lives.
create a world without blood cancers.
Geographic areas served:
US / Canada
A) research programs: with advisory input from recognized biomedical research experts, lls funds exemplary projects across the entire research continuum relevant to improved outcomes for blood cancer patients, from basic laboratory science through clinical trials, and from investigator-initiated research to private-sector drug development alliances. Lls is deliberate and purposeful in finding and supporting research that is most likely to help patients as soon as possible. (continued on schedule o) to date, lls has invested almost 1 billion in research aimed at helping all blood cancer patients live better, longer lives. We will continue to support research through our innovative and integrated funding programs, until every patient has a safe and effective therapy. In fiscal year 2014, lls supported research in the u. S. , canada and 7 other countries with a total research disbursement of approximately 78 million. Research funding was distributed across all blood cancers. Our critical role lls programs accelerate relevant research outcomes by: - building a focused research work-force: assuring the next round of breakthroughs requires that young investigators be encouraged to work in blood cancer research fields. - turning discoveries into new therapies: fundamental new findings can be translated into safe and effective treatments that can ultimately prolong and enhance patient lives. - supporting synergy: large grants and contracts enable scientists in academia and the private-sector to collaborate, combining resources and expertise to produce more and faster advances. - filling a void: research projects that are high-risk and/or address rare cancers are less likely to be funded by government agencies or for-profit companies, but may provide important advances. - speeding new treatments to patients: partnering with biotechnology and pharmaceutical companies can advance promising therapies through clinical testing, faster. Past advances made with lls research funding generous donors have helped lls support research that has already benefited blood cancer patients and many others. Advances include: - multi-drug therapies that are more effective than treatments with single anti-cancer agents, - bone marrow / stem cell transplantation and supportive care treatments for patients who relapse despite the best available therapy, - tests that distinguish specific characteristics of particular blood cancers for accurate diagnosis of cancer subtypes, and for "risk stratification" to select an optimal therapy. Targeted therapy research discovering the molecular abnormalities that cause particular types of blood cancer has been useful in diagnosis and risk stratification, and in new "targeted drug" development. Lls-funded investigators have helped advance molecularly targeted treatments that can selectively kill blood cancer cells versus normal cells. Many of these new treatments benefit not only blood cancer patients, but also patients with other diseases. For example: - gleevec is fda-approved for patients of all ages with chronic myeloid leukemia (cml), and is also approved for patients with one form of acute lymphoid leukemia (all), myelodysplastic syndromes (mds), myeloproliferative disorders and rare forms of stomach and skin cancers. Related drugs, sprycel and tasigna, are approved for patients who do not benefit from gleevec. One or more of these drugs are also showing promise for patients with various lymphomas, acute myeloid leukemia (aml), chronic lymphocytic leukemia (cll), and other cancers, including brain, breast, head-and-neck, lung, pancreatic, and prostate cancers, and patients with other diseases including alzheimer's, asthma and pulmonary hypertension. - rituxan was the first fda-approved, anti-cancer antibody drug, developed for patients with forms of b-cell non-hodgkin lymphoma (nhl). It is now also approved for cll patients and as a "maintenance" therapy for follicular lymphoma patients, and showing promise for patients with all and after stem cell transplantation. In addition, it is approved for treating patients with severe rheumatoid arthritis and two other types of autoimmune diseases. A related antibody drug, arzerra, is approved for cll patients and showing wider promise. - velcade, thalidomid and revlimid are fda-approved for patients with myeloma and are also helping some patients with hodgkin lymphoma and nhl. Krypolis was recently approved for myeloma patients for whom at least two prior therapies were insufficient. One or more of these drugs are now being tested for patients with t-cell and b-cell forms of lymphoma, acute leukemias, as well as aids-related kaposi sarcoma and brain, breast, colorectal, head-and-neck, kidney, liver, lung, ovarian and prostate cancers, and alzheimer's disease. - istodax, zolinza, dacogen and vidaza target small chemical, "epigenetic" changes. The first two drugs are approved for patients with peripheral t-cell lymphomas; the latter drugs are approved for mds patients. One or more of these drugs are being tested for patients with all, aml, cml, cll, myeloma and forms of nhl, after stem cell transplantation, and for patients with breast, brain, kidney, colorectal, head-and-neck, lung, stomach, prostate and ovarian cancers, melanoma as well as sickle cell disease and persistent hiv infections. - adcetris was approved in 2011, and in january 2012. It is an antibody- drug conjugate that combines an anti-cd30 antibody and the cytotoxic drug monomethyl auristatin e (mmae). It is an anti-neoplastic agent used in the treatment of hodgkin lymphoma after failure of autologous stem cell transplant or those who are not eligible for asct after failure of at least 2 mutiagen chemotherapy regimens. Adcetris was also approved for systemic anaplastic large cell lymphoma with failure of at least one prior treatment. - gazyva is a humanized monoclonal antibody used as a combination treatment with chlorambucil to treat patients with untreated chronic lymphocytic leukemia. It was approved by the fda in november 2013 and by the eha in july 2014. - imbruvica is an oral small molecule inhibitor agianst btk kinase. It was first approved by the us fda on november 13, 2013 for the treatment of mantle cell lymphoma patients who have recieved at least one prior treatment. On feb. 12, 2014 the us fda expanded the approved use of the drug to chronic lymphocytic leukemia (cll) patients who have received at least one prior treatment. Additionally, it received further expansion to treat 17p deletion in cll with or without prior therapy. - zydelig is an oral small molecule inhibitor that blocks the delta isoform of the enzyme phosphoinositide 3-kinase. It was approved by the fda in july 2014 to treat relapsed/refractory cll in combination with rituxan. It was also approved to use as a monotherapy for relapsed mantle cell lymphoma and follicular lymphoma. Other active research directions lls-funded researchers are also exploring other areas of research that hold promise for patients: - novel stem cell transplantation procedures: these include so-called "mini" transplants that use less toxic pre-transplant treatments and engineered donor cells that help reduce post-transplant complications, making these potentially curative treatments available to more patients. - immunotherapies: including antibodies, vaccines and engineered immune cells, these targeted therapies help a patient's immune system fight infections and kill residual cancer cells, prolonging remissions, and perhaps one day replacing toxic chemotherapies. - diagnostics: new technologies make it possible to characterize the abnormalities in individual cancer cases in molecular detail. This information can be used to help choose the best possible treatment for each patient, especially as more targeted therapies become available. - quality of life research: these studies increase our understanding of how specific treatments can cause debilitating side-effects, including late-effects, and which patients are at risk for developing these complications, so that they can be better managed or even prevented. Driving research to address unmet medical needs lls continues to solicit and support research focused on improving blood cancer patients' quality of life after today's curative therapies. Also in 2014, for the third year, lls actively recruited research proposals in six other underdeveloped research areas in which progress is likely to improve outcomes for patients with particularly urgent needs. New research is focused on: - development of novel therapeutic strategies for patients with non- cutaneous t-cell lymphoproliferative disorders - develop novel targeted therapies for cll patients, with real curative potential - develop novel treatment strategeies for mds and aml patients - develop novel targeted therapies for patients with high-risk myeloma - development of new-targeted therapies for indolent lymphoma patients - define genetic/molecular predispositions
b) patient & community services: an estimated 1,129,813 people across the united states (us) currently battle leukemia, lymphoma and myeloma. The leukemia & lymphoma society (lls) offers a free, comprehensive array of services to blood cancer patients and their families, volunteer caregivers and advocates, healthcare professionals and the public. (continued on schedule o) lls is committed to providing the most accurate and up-to-date blood cancer information. Professional volunteer clinical advisors work with lls staff to review all of the information lls provides through healthcare professional and patient education programs, publications and the lls website. A number of resources are available in spanish for patients, caregivers and healthcare professionals. Lls publishes an annual compilation of data available for blood cancers, including the estimated numbers of new blood cancer cases and deaths, the most recent statistics available for incidence, mortality and survival; and current and accurate information about symptoms, risk factors and treatment. Publications an extensive catalog of education materials is offered free-of-charge to patients and healthcare professionals. Each year, lls distributes booklets, brochures, fact sheets, education program transcripts and dvds through the information resource center and lls chapters. Many materials are also available to view and download at www. Lls. Org/resourcecenter. Downloadable materials are available in english, spanish and french. - 742,148 printed booklets, brochures, fact sheets, education program transcripts and dvds distributed in 2014. Financial assistance in 2014, a combined 51,924,134 was disbursed to patients through the lls patient financial aid (2,523,615),co-pay assistance programs (49,246,019) and the lls patient travel assistance program (154,500). Patient financial assistance programs for more than 47 years, lls has helped patients demonstrating significant need to obtain financial assistance to cover a portion of their treatment costs. The lls patient financial assistance program provides a limited amount of financial assistance to help patients with significant financial need and who are under a doctor's care for a confirmed blood cancer diagnosis. Patient financial assistance funds are subject to availability. - 25,854 patients received patient financial assistance in 2014. Co-pay assistance program this co-pay assistance program helps patients with many kinds of blood cancers meet their health insurance or medicare plan part b or d premiums or co-payment obligations related to treating their cancer. Patients with prescription drug coverage, medicare beneficiaries under medicare part b and/or medicare part d, medicare supplementary health insurance or medicare advantage should check with lls to see if they meet eligibility requirements to receive financial support. Co-pay assistance is subject to fund availability by specific blood cancer diagnosis. For more information call, (877) lls-copay (877) 557-2672 or visit www. Lls. Org/copay. - 18,640 patients received lls co-pay assistance in 2014 community programs each lls chapter office is staffed with a patient services manager (psm) who oversees services to patients and their families, caregivers and healthcare professionals. Psms are healthcare professionals, often with a background in oncology nursing or social work. Psms serve as liaisons with community and regional oncology/hematology healthcare professionals and treatment centers. Community-based education and outreach, support and public policy and advocacy programs are available. - 27,459 patient and caregiver participants across the us in 2014 - 10,798 healthcare professional participants across the us in 2014 programs for children and young adults the trish greene back to school program for children with cancer focuses on increasing communication among healthcare professionals, parents, patients and school personnel to support children, adolescents and young adults living with cancer. Printed literature, videos and other materials to aid the process are available in communities throughout the us and canada via lls chapter offices. The program includes staying connected: facilitating the learning experience during and after cancer treatment. This education program for school personnel, healthcare professionals and parents describes physical, cognitive and psychosocial short-and long-term effects that children, adolescents and young adults may experience during and after treatment. The program offers guidance and numerous resources to help children, adolescents and young adults continue their education during and after treatment. - 1,075 school personnel, healthcare professionals and parents participated in the 22 staying connected programs across the us and canada in 2014. Family support groups lls has developed 344 family support groups at chapters throughout the us and canada. Lls also has 618 volunteer support group facilitators with backgrounds in oncology nursing or social work. Groups are guided by two volunteer oncology health professionals, providing information and support and encouraging greater communication among patients, families, friends and healthcare professionals. - 13,811 participants in family support groups across the us in 2014 patti robinson kaufmann first connection program first connection is a program that links newly diagnosed patients to a peer volunteer who has experienced a similar diagnosis. A trained patient-volunteer currently in remission contacts the new patient to share information and support. This program is available through lls chapters. - 5,616 first connections across the us in 2014.
c) public health education: information and education information resource center paying for medical care, making treatment choices, communicating with healthcare providers, family members and friends-these are some of the stresses that come with a cancer diagnosis. (continued on schedule o) lls information specialists are master's level oncology social workers, nurses and health educators who provide help with disease, treatment and clinical trial information and support. Lls information specialists conduct clinical-trial searches to help patients work with their doctors to find out about specific clinical trials. Patients, families and healthcare professionals may speak to an information specialist at (800) 955-4572 monday through friday, 9 a. M. To 9 p. M. , et, email infocenter@lls. Org or chat one-on-one via the lls website. The information resource center offers translation services in more than 165 languages. - 48,326 inquiries in 2014 the lls website the lls website, www. Lls. Org, fulfills a wide variety of education and information needs. Visitors can personalize their web pages to their location to keep current with disease-specific updates and community education and support activities. The website provides access to lls programs and services, including co-pay assistance, the most current and accurate information and statistics, weekly facilitated online chats, national telephone and web education programs, publications in english, spanish and french, and clinical-trial searches via an online clinical- trial search service that offers patients and caregivers immediate access to listings of blood cancer clinical trials. Patients, caregivers and healthcare professionals can interact with lls and one another through social networking, podcasts and enewsletters. National telephone/ web education programs lls sponsors telephone and web education programs for patients, caregivers, survivors and healthcare professionals about leukemia, lymphoma, myeloma and myelodysplastic syndromes. In 2014, 9 lls national education programs featured disease-specific updates and information about support and treatment options from world renowned clinical experts. Opportunities are provided to ask questions of experts during these programs. These programs offer continuing education credits for nurses and social workers. Lls also sponsors a range of professional education programs. Recent programs explored the administration and management of current therapies for hematologic malignancies and communication among primary care providers and hematologists/oncologists in managing patients with hematologic cancer. Upcoming programs are posted at www. Lls. Org/programs and archives of past programs are available at www. Lls. Org/pastprograms. Professional education programs are available at www. Lls. Org/professionaled. Lls also offers disease-specific webcasts presented by world renowned clinical experts. These can be accessed at www. Lls. Org/webcasts.
d) professional education: lls serves the educational needs of the medical and research community through a number of professional education symposia offered throughout the year. The educational program offers varying formats to facilitate the exchange of information and ideas on the newest developments in cancer research and treatment.
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6 people found this review helpful
When I was diagnosed with Non-Hodgkin Lymphoma I was afraid and thinking the worse. My family and I did not have any idea what the diagnosis meant for the long term. My doctor and his staff were excellent and they were focused on the treatment plan. I found a copy of the LLS booklets on Lymphoma, Understanding Lab and Imaging Tests, and the Lymphoma Guide. For the first time I was beginning to understand the cancer and treatment. This information gave me comfort and confidence. I contacted the folks at LLS and they recommended online education and chat rooms. I did both. It was have been extremely difficult for me to make it through my treatment without LLS. I found their printed material easy to read and understand for a non-medical person. I also found their staff to be professional, caring, informed, patient and understanding. I would highly recommend them to anyone who needs information on blood cancers (patients, caregivers, family, medical professionals), anyone who wants to volunteer for a world class organization, and anyone who wants to donate to a charity that is extremely worthy of your trust and donation. Thank You LLS for helping me and my family, I will never forget your kindness and support. Tom W.
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Professional staff should be evaluating and changing the organization if needed. I have not observed anything that I would recommend changing.
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I am in remission from AML. I read one man who felt the woman disappointed with receiving no assistance fro, LLA was ungrateful. Realize it take money to receive treatment, just as it does to finance research. If I can't afford gas to get to my chemo then how beneficial is the chemo. If I can'afford food, let alone healthy food,' how well will my treatment work. Research is a huge part of where donations go, but so are the needs of the patient, I have been in those shoes as a patient....disabled receiving government assistance. We lost everything, even became homeless, due to the expenses incurred. One doesn't prepare for cancer when every penny goes to just living.
My son, my hero, my inspiration
Anthony was born in Mishawaka, Indiana at on March 27, 2002. I was a single mom working as a waitress and a bank teller while living with my mother. At 19 years old I had no clear indication of what my life would be like with a child. Little did I know he would be the influence for all the best choices I would ever make. If it were not for my 10lb 23 1/2” handsome baby boy, whom came barreling into this world blue and relentless, my life would have resulted in far less happy and pleasant times. I joined the Army when he was 3 years old to ensure our lives would have some stability and decrease in chaos. We didn’t have a home of our own, we were taken care of by my mother. He did not need for anything and I was so very blessed for that. He grew into a personality that one would describe as a ham. He loved making people laugh. He really loved being able to run and play without restraint. I ensured he would have all the opportunities to cultivate his numerous interests. We would finger-paint in the kitchen without rules (newspaper taped everywhere with Tony in a diaper and his hands, feet, and body for the brush). I involved him with all forms of chores and activities in the house. When he was 3 we commenced trying to teach him, or should I say allow him, to make Kool aide. That day was annotated as the Kool aide caper day! His curiosity was inspiring and everyday was truly a new adventure for both of us. He attended numerous schools due to our frequent moves from my military service. Although many would think moving like this would be disruptive, it was quite the contrary for Anthony. He loved to go new places, meet new people, and get out to enjoy life. He always had a sense of adventure to him and change was never something he feared. We settled in Seattle for our last home together from seeking out the children’s hospital as a last hope for a chance.
NEW STATE, NEW HOME, NEW SCHOOL: Upon our return to Louisiana, we were yet again on orders to move to Kansas. We were excited and curious to see what life would be like back up north again. We were thankful we would be much closer to family even if they drove us nuts sometimes. We settled into our new home and Anthony began school once more somewhere new. He came home the first week with tales of misadventures and all the friends he was quickly making. He was never one to be shy and was highly regarded by his teachers and classmates. The class clown with manners was something new many of the faculty had not seen before. I never had any behavioral issues other than the fact that he HATED homework. He was smart as a whip but when it came time to sitting still and showing his knowledge on paper, it was a fight to the death! Patience was definitely something we both learned to rely on together. A new week began and as I patiently awaited his arrival on the bus I was thinking about what we would be doing this weekend. I was planning a large Halloween event (it was our favorite holiday, mine more than his). I saw him coming off the bus with a slight limp. I asked very quickly “what’s wrong baby”? He said “nothing mom, my legs just hurt a little”. A little was one way Anthony showed how truly strong and enduring he was. He didn’t mention he cried through most of gym class. He didn’t mention he could barely bend his knees. He never wanted me to worry about him. He was always trying to protect my feelings. Even at the age of 6 years old he cared more about others than himself. To say he was tough is truly not an accurate description. The gym teacher had him sit out of class for the day due to his strained attempts at participating in kickball. I told him to try again tomorrow and I called the nurse to have her call me if anything changes or it gets worse. In my head I was thinking growing pains and a little too much activity. I was watching him wince and moan at home that evening and assumed he would be ok.
BUT, HE NEVER EVEN HAD THE FLU BEFORE…..:The next day he returned home but in a much worse state than the day prior. He could barely walk. He was crying on and off. He looked scared and now I was too. I immediately called the doctor’s office and the soonest they could see us was the next day. I was married to my ex-husband at the time and he was going to take him for me. I wanted to go but unfortunately the saying in the Army is if they wanted you to have a family they would have issued you one (thankfully this statement became irrelevant following his diagnosis). That evening while I assumed he was soundly asleep, a terrible scream came echoing down our hallways. It didn’t stop and I fell a few times running to get to him. I assumed the worse; a break in and someone hurting him. However; it was not that at all. He was lying in bed with his face frozen in pain. He was screaming that his bones hurt and he couldn’t move them. I tried to console him and hide my fear. I soothed him with words a warm towel and some Tylenol. I laid with him that night and prayed that he was going to be okay. To say the next day went by like a bad dream would be an understatement. I was in processing my unit while Anthony was at the doctor with his step dad. I was unaware of what was going on and dutifully watching my phone for any news. I made it home before they did that day. I watched my truck pull up with my beautiful son in the passenger seat, eyes red from tears. My ex-husband ran to the other side of the truck and began helping my son out. I darted inside to get his overstuffed bean bag to place in the driveway because he could not bear to walk another step. The look on his face was gut wrenching. I went into the house and was told the most unbelievable news I could have ever dreamed of. Something you would only see on a big screen between two seasoned actors. I was told they had a room at Children’s Mercy Hospital in Kansas City waiting for our arrival. It was vaguely stated that they may be concerned there was a need to check for blood cancers but most likely he just had a terrible infection and we would be back home in no time. I felt that this did not make sense. I felt in my heart and stomach that something was terribly wrong and they did not have the nerve to tell us. I packed a bag for a couple days in between constantly checking on Anthony and repetitively asking if he was okay. He kept asking if he was okay and I said they just need to do some tests and he would be just fine. I felt like I was telling a terrible lie. I didn’t know I really was. Anthony had never had the flu, an allergic reaction, or even a broken bone. He was healthy as developmentally ahead of his peers. I didn’t feed him fast food. We ate a full balanced meal every night at the dinner table. He even loved Brussel sprouts, yogurt, and salad. I drove with a determination I had never had before. Even more than while deployed and dodging things that would take my life. He slept in between us and my tears would not stop flowing. MORE EARTH SHATTERING NEWS: On the 2nd of October 2009 we arrived at Children’s Mercy. We did the appropriate paperwork at the first floor admission desk still unaware of what exactly we were being admitted for. Thankfully I had the foresight to join the military and insurance was not a concern. I could only imagine how this story would have unfolded if it had not been for the amazing healthcare benefits we received. We were escorted to the third floor via back hallways. Tony was in a wheelchair crying once more because of the pain. I inquired as to where we were going and was informed the 3rd floor. Upon our arrival I was a bit disoriented by the business of the floor to notice where we were. We got to our room which I immediately thought was very large and roomy for just doing tests. There was a whiteboard in front of my face that said: WELCOME ANTHONY to the pediatric cancer floor. For more information please check out www.cancer.org and follow the pediatric link. I felt the floor give way underneath me. I looked at Tony as he was being picked up and placed in his new bed, screaming from pain and discomfort. I held back my fear, anger, confusion, and sadness to assist in getting him some comfort. I knew at that moment we were no longer soldiers but we now had to wear the survivor hat. The next few days were like a reoccurring nightmare. Questions, history gathering, more questions. Meetings with doctors who disclosed he did in fact have AML. They took us to the bad news room for this. Many parents who have been in my shoes know exactly what I am speaking of. They gave us time to ask questions, cry, ask more questions, and yell in distress and confusion. After gathering myself with my new you have cancer now what binders I began the journey as a mom with a child who has leukemia. An advocate, vomit cleaner, head shaver, comforter, tear dryer, pillow, stress magnet, and more. Most of all, I was still his mother. Lost and mad that I could not do anything to make him better. No amount of “I love yous” or gifts made any of it any better. Watching him be poked for blood samples and scream because he had never had his blood “taken” before. Sitting in the waiting room while he went into surgery for his Hickman line not knowing the amount of detailed work in aftercare it would present. How horrid it would look to have tubes hanging out of his chest. The screams he would release while having his dressings changed. The fear of never knowing what was next. Dr. Gammis was our oncologist, friend, and most importantly my sounding board. I told him to never hold anything back and to be honest with even the worst of possibilities. I wanted to be informed, knowledgeable, and ready for whatever could happen. He gave me the best and the worst of news without any allusive or ambiguous wording. He was comforting and devious while interacting with Tony. He saw the fire in my son and we all decided that the aggressive and tedious chemotherapy regimen was what we needed to do. The details of the treatment are lengthy and boring you with them would be a distraction from the purpose of this story. Even though we were told Tony had one of the most aggressive leukemia’s in children and he also carried the FLT3 mutation making his disease even harder to treat, we stated often that he would kick this things but like they had never seen before. And my friends that is exactly what he did. Two months and two chemo regimen later, there was no leukemic cells to be found. We completed a few more rounds and were discharged with a hail and farewell of nurses and doctors all crying tears of joy. In my head all I could think was this was way too easy and there was no way this was over.
Part of living in remission was to return to the hospital once a month and he would have to endure multiple bone marrow aspirations until we reached the 2 year mark of all clear. They would draw his blood, check his height and weight, take his vitals, and we would wait a few days for the results. The time passing while waiting became less excruciating as time went on. With every all clear I felt a little less questionable about the ease of which he beat this awful disease. It all seemed too easy. Life went on as we had once before. He returned to school somewhat of a hero and enjoyed every minute of it. The only part he truly disliked was losing his hair and the stares he would receive when he wasn’t wearing a hat.
Out of nowhere:After about six months Tony was back to being himself physically and mentally. Nobody would have ever been able to tell he was just beaten down with a determined leukemia and deadly chemotherapy. He joined the tackle football team (with some reassurance from me to his doctors) and lived with the enthusiasm and comic relief I was always used to. Unfortunately this return to our normal was short lived. I was recently reunited with my middle school romance and we had moved in together with his son who happened to be the same age as Tony. They got along like two peas in a pod and at times not so much. But they both regarded each other as brothers and looked out for one another accordingly. While eating dinner one evening I noticed a large and swollen scab on the top of Toy’s right arm. He had on long sleeves and attempted to pull them down quickly. I began questioning him about the nature of the scab and examining it like I was a doctor. You see following the AML diagnosis, I went from a somewhat relaxed mother to a full blown hoverer. Every cough, sneeze, scab, bruise, or complaint I would directly connect to a possible relapse. I had no idea this was actually going to be reality. He explained to us that it was a bug bite he kept scratching. It was swollen and red to about the size of a golf ball. I could tell it was infected but I figured since his immune system was recovering it was just a little harder for him to heal. I called his local pediatrician and the next day we went in for our appointment. Following a very detailed health history and voicing my concerns the doctor swabbed his arm and stated they would proceed to treat as if he had a staph infection. I asked if she was going to draw his blood but she assured me it was not necessary and he would be okay. I left that appointment feeling that something was missed. I didn’t think the effort was placed in understanding his whole health picture. After a few days of antibiotic and creams, he spiked a 103 fever. It was after hours and I remembered quite vividly that while he was receiving AML treatment any fever of 101.5 or higher was an immediate ER visit. I didn’t hesitate to follow that guideline even though he was technically in the clear. My fiancé reassured me that he was just fighting an infection and the hospital would not be condemning him to a relapse. We both waited for what felt like hours for the doctor to return with the blood work results. A heard a knock on the door and when the nurse entered her face said more than her mouth ever could. I began shaking, trembling really, and sucking in my breath. I followed her into the hallway where her first words where “I am so sorry”. I crumpled and she caught me. She consoled me and asked me if there was anything she could do. Initially I said not but then I asked her if should could contact Children’s and coordinate our arrival. She smiled with tears as well and said she would do anything she could. I went outside to call my significant other and all I could let escape my mouth was “it’s back”. I still had to face my son and tell him the terrible news once more. I took a deep breath, walked into his room, and he looked up with tears and said “it’s back again huh mom”. I grabbed him and allowed him to cry for as long as he needed. It wasn’t long before he looked up and said “guess I am going to lose my hair again. But, hey at least this time I know what’s coming”. His bravery was unprecedented. He knew he would be receiving more chemo as well as a bone marrow transplant. This was the standard procedure for an AML relapse. He did not have any biological siblings so we had to rely on the donor registry. A marrow match was what we were hoping for since they have the best outcomes. However, Tony was incredibly unique in his genetic makeup and no human donor was close enough for the team to feel comfortable using their marrow for a transplant. We did however have a match to a chord. Mothers can donate their umbilical cords for the purpose of extracting the stem cells for cases like my son. Thankfully we had one that was only one point less than a perfect match! A transplant was an arduous process that kept us in the hospital for well over 10 months. Prior to even beginning I had to have difficult discussions surrounding complications with the worst being his death. This time was different, this time we felt more hope and encouragement for a cure than before. There was a new drug in clinical trials that Tony was applicable for. It had been shown to latch onto the FLT3 mutation and kill the copier that produced them. It sounded like this time, no matter what; this was going to be it! We were scared but excited at the potential for this drug (Sorafineb) and the transplant to rid us of our nightmare. We completed the 2 rounds of preparatory chemo to eliminate all living cells from his body. This treatment was to bring him as close to death but not quite in order to have the new stem cells graft without his body rejecting them as foreign. The day of the transplant was very anticlimactic. The most memorable part was the awful smell that we were warned of. I didn’t know what burnt cream corn smelled like but that day I found out.
Moving forward once again: Once again Tony surprised everyone but himself. He knew he would do amazingly well with the chemo and transplant. He told us it was no big deal all the time. He would say I was the one making it a big deal. I thought this is Ludacris!!!! He is undergoing some of the most life threatening medical procedures and I am wrong for thinking it was big deal. He was right. We were released from the hospital 100 or some odd days later. Awaiting us at home was a portable feeding system (which was about as awful to watch as the BMT’s), IV’s and fluids, and other various medical supplies that we were now in charge of handling.
We worked together as a family to ensure he was getting all his meds and flushes, dressing changes and feeds on time and clean. We did okay in hindsight. Following our second 2 year remission mark, we received orders sending us to Colorado. I called Dr. Gammis and his nurse to inform them of the news. They told me he is doing so very well that they felt he would be well into a long remission and did not fear any chances of another relapse. Another relapse was now the worst possible situation and fear I lived with daily. Although Tony went on with his life living and acting as if nothing happened, the truth is if it came back, there was not anything further the doctors could do. However, I was sure his AML was gone for good this time and was not at all concerned about the move or transferring his care. We made it to Colorado safely. We found a great house, got both the boys enrolled in school. We did have to stop the sorafineb due to complications consisting of severe bleeding inside his intestines. While he was supposed to be treated with it for many years, the doctors felt that stopping it now almost 3 years after his transplant was ok. If it wasn’t for the drug, they were sure he would have relapsed already and due to being past 2 years in remission, the drug had seemingly served its purpose. He was happy to have no further medications to take. At one point he was up to 10 a day. He told me to stop worrying so much and let him be a normal kid. So that it what I did.
The day my heart was ripped from my chest: 22 August 2014; following a mini vacation to Ohio to visit family Tony was admitted to the ER for a high fever that would not break. Call it intuition or motherly instinct; I knew it was back once more. I didn’t want to think the worst and wish it into existence but my head and heart already knew. We were officially diagnosed on 25 August 2014. I instinctually went into aggressive chemo mode as did Tony. He did not address the fact that we were told he would die this time. We discussed chemo and blood counts, possible plans and palliative care. Death was not spoken of until the first line of chemo defense failed. It was then I knew I would have to bury my sweet young man.
Our finals days:Our care conferences included Tony. I wanted him to have the autonomy to dictate how his body was treated. I knew he would die sooner than later and as a young man now he deserved to have a say so in his final months. The main question was always, what else we can do. Unfortunately, the same answer was given: with a second relapse and failed transplant there are no medical interventions that could give your child their chance of disease free living. So we began chemo maintenance with the intent of extending his time with us. All we wanted to know is why it has to be like this. He dictated what he wanted his DNR to encompass. Explicitly stating that if he stops breathing on his own he does not want life saving measures like tubes to keep him with us. This was the hardest part to hear and as his mother it took every fiber of my body to comply with his wishes. He expressed the types of medications and chemo’s he was willing to try. After all the planning was done, the emotions and fear swelled up. He would be okay then begin crying uncontrollably, asking me why he had to die, what was death going to be like, what was heaven like. I sat and answered all these questions and more as stoic as I could be. I kept my tears and fear from him. I couldn’t bear to burden his 12 year old heart anymore. We had a few outings where we could travel around Seattle within an emergency distance. In palliative care patients are giving more freedom to leave the hospital and begin enjoying what’s left of their lives. One day we ventured to Pikes Market. I gave Tony 80 bucks to spend however he wished. It wasn’t 1 block from the car I witnessed something I came to take for granted with my son. There was an older gentleman sitting on a bucket leaning against the light pole. He looked disheveled and distraught. I had always involved Tony with volunteer opportunities and giving more of himself than taking from this world. This sweet young boy with fresh 20 dollar bills in hand decided to exude those values once more. He handed this man a twenty, shook his hand, and gave him a smile. I kept walking as to not make a big deal and embarrass him. I asked him what he did like I hadn’t seen it happen and he said I gave him some money because he looked like he needed it more than me.
Goodbye came too soon: A few weeks later we decided to go to our new apartment in Seattle (next door to the hospital) and begin hospice care. He was distraught at first believing we were giving up on him, but his counts were proving the leukemia was more aggressive than the treatment. We spent that first night playing video games, monopoly, and eating a home cooked meal. Then the pain began. He was on a pain drip that was not touching the incredible burning feeling he was having through his bones. He would cry, vomit, cry, sip water, and vomit it all up seconds later. I explained we were doing everything we could and it was ta that moment, for this first time in his 6 year leukemia journey he said “Mom, I am done with chemo, I am done fighting”. I wept, I became angry, I left the room, and I wanted him to take it back. I gathered myself and went back in with his evening dose of chemo and meds. He said “this is the last time I am taking chemo” and “I love you Mom”. He fell into sleep finally around 1 am. The next morning I was awakened by my husband frantically trying to rouse me. He said “there is something wrong with Tony. He is lying on the ground not talking”. I fell and ran to his room where I found my son laying against the bed with his sweatpants down after he had attempted to use the bedside commode. He was staring at me but wasn’t speaking. I don’t know if he even could. He had green bile coming from his mouth and dripping down his chest. He had peed himself as well. Freaking out is not a great way to describe what I did next. Pure terror and panic took over. I called 911 and kept trying to get him to talk to me. He was completely unresponsive. I didn’t get to hear him say I love you. I didn’t get to hold him with him holding me back. I didn’t get to tell him how sorry I was for anything I could ever think of. I didn’t get to hear him utter another word ever again.
12 year olds legacy:Anthony died 3 hours later on the 9th of January 2015 at 952 in the morning. I laid next to him, touched him, felt his cold skin, and kissed him hundreds of times. I listened to the background noise of monitors warning us the time was nearing. There are no words to describe how those moments felt. I respected his wishes and expressed his desires to the emergency team. They gave us a quiet room on the cancer floor with one nurse present for privacy so we could watch our son die in peace. Why him? Through his life Tony showed great acts of courage, kindness, and forgiveness. He never complained about his path and always thought he was destined for greatness.
The Leukemia Lymphoma Society became a part if my life after my sons initial diagnosis. We knew how horrible and devastating our situation was and witnessed it over and over again with each new face that came onto the hospital floor. We volunteered out times, walked at all the fundraising events , spread awareness, and raised money to help LLS with the fight against blood cancers. I hoped my son would see a day that cures were more prevalent than remissions. Although that did not happen I still believe one day is sooner than later for others facing this demon. After Anthony passed they reached out and offered to honor my son as a remembered hero for the 2015 Light the Night Walk. My heart stopped for this was one way he would make the mark he asked me to do in his name. I was asked if I could speak at recruiting and fundraising events about him and our mission. Everytime I got on stage I felt the loss once more but, a calm would follow that allowed our story to move mountains and touch the hearts of so many who knew nothing about childhood cancer. I can't repay the healing the LLS has assisted in helping me achieve but I will always be one of their leading advocates in the war against leukemia and lymphoma. Below is a link to one of the presentations I gave to help raise funds for research and one of the videos of my son and I fundraising.
Thank you for reading and considering LLS.
Charmagne Alex Lafortune
https://youtu.be/mV5O8Y4O-bI - LLS presentation
https://youtu.be/9TOyOPQATWU - Tony and mom taking a pie in the face
This is Mama Linda. She is battling cancer – and she inspires me to give.
My mom is battling non-hodgkin’s lymphoma; she’s been fighting for her life for close to a year now. At first, I didn’t really talk about it to people beside my family and closest friends. But in August my mom received the (not totally unexpected but still completely unwelcome) news that her cancer didn’t fully respond to the first round of chemo. That it was still with her, and that she was facing a really tough few months of aggressive treatment with lots of hospital stays and a stem cell transplant down the line.
This woman is my light. People gravitate towards her – it’s her smile, her laugh, her open warmth that just can’t be ignored. She’s dedicated her life to helping impoverished families with young children. Everyone calls her Mama Linda because she’s been mother to so many – not just me and my sister. She is a wonder, and even this bad news she handled with bravery and with grace.
I, on the other hand, was a bit of a mess.
This is something so big, so scary, and so completely outside my control. Just the month prior we lost a beautiful aunt to CNS lymphoma and it felt like this unwanted evil was invading our lives and taking away those we loved so dearly. So of course I felt like I needed to do SOMETHING. It’s human nature, right?
That’s when I discovered the Leukemia & Lymphoma Society.
The LLS is the largest voluntary cancer research agency specifically focused on finding cures and better treatments for blood cancer patients, supporting hundreds of cancer scientists around the world. What they do – who they support – saves real lives. Lives like my mom’s. And every year they hold a fundraising campaign to light the night with love and hope. So I decided to get involved and form a team in my mom’s honor.
I announced it on Facebook, and within three hours raised a thousand dollars.
You read that right: $1,000 in three hours, via a single Facebook post.
We were floored at the outpouring of love and support – but that turned out to be only the beginning. My mom has made such a tremendous impact on her community that people from all walks of life rallied to support us in any way they could. Because my mom works to support families of limited means, honestly not everyone could afford a cash donation. So instead, those people joined our team to donate their time.
We fundraised HARD while my mom got her stem cells harvested. As we sat in the hospital together we hugged; we laughed; we cried; we couldn’t believe what was happening. I upped our goal to $5000 and sent hundreds upon hundreds of thank you notes.
Look, I knew my mom had deeply touched many people’s lives. Now I know exactly how much she’s meant to them. In just one month Team Love for Mama Linda raised $8700 for the Vermont chapter of the Leukemia & Lymphoma Society.
On Friday, September 25 my mom’s closest friends joined me in Burlington, VT for the LLS Light The Night Walk: a beautiful ceremony honoring all our loved ones who have fought their own cancer battles. It was breathtaking: each of us, together, weaving through the dusk of the city with a white, red, or yellow lantern as a survivor, a supporter, or in memory of those we’ve lost. The community came out and cheered us on; I patched my mom in via video call so she could take part. I can’t tell you how much this one night – and this whole campaign – meant to all of us.
I’m both humbled and proud of what we accomplished. But the Vermont LLS chapter has not yet met their goal; they’re still over $20,000 short of the $90,000 they hope to raise. Although my friends and family are tapped out, I want to do whatever I can to help the LLS hit their number. And so I ask for your consideration: The Leukemia & Lymphoma Society is a wonderful non-profit. The funds they raise – the funds we all raise together – goes to real scientists doing real research to save real lives, now. Please give us your vote – your like – your thumbs-up – so we have a shot at contributing $5,000 more to this cause.
My mom just got her stem cell transplant on Monday. I’m writing this sitting next to her at the Norris Cotton Cancer Center at the Dartmouth-Hitchcock Medical Center. By all accounts she’s doing well and she’ll be going home in another couple of weeks. The road ahead of her is long, but she’s a spirited fighter.
And this is the only way I know how to help her in her fight.
3 people found this review helpful
Chapter manager NY/VT engages in breach of privacy. Corporate unwilling to help directs to chapter manager. Very unorganized and unprofessional.
Thank you for bringing your concern to our attention. We will investigate.
14 people found this review helpful
The organization is one heap of a mess, with years of neglect, turnover, and is facing huge financial challenges. At the end of FY14 (June), the company announced a $30 million deficit at the national level, a regional restructure (resulting in more deficits), and severely reduced staff support across the chapters. The operations of the organization is atrocious, from finance to IT to HR, and the overall culture lacks work/life balance and fairness.
15 people found this review helpful
I used to work for them for years and the direction the CEO is taking the organization is atrocious. Their Patient Services department has now been dismantled and taken over by Advocacy. The 3 things that matter to them: money, research and advocacy, not patients. They have now gone to a regional structure, hired regional people with no patient outreach or program experience, only advocacy or fundraising experience. At the local chapter level, where they used to hire professionals with a masters degree to do the patient and educational programs, they now hire just about anyone. The new people are rude, abrasive, real losers who otherwise would not have a job. The previous CEO started the patient services programs because he cared, the CEO there now 4 years does not care for patients and his board backs him up. Also, the head of fundraising, George Omiros is a tyrant along with his people, including one of The CEO's previous lover, who continues to be promoted. Give to another org.
If I had to make changes to this organization, I would...
Fire everyone at the top and bring people in who care and can inspire people
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3 people found this review helpful
LLS is and always will be a charity that's close to my hard. I'm a firm believer in the great work they do. The focus is on blood cancer, but the research benefits other cancers. The treatments they've funded have often gone on to benefit other cancers.
I became involved in 2008 when my 25 year old brother was diagnosed with AML. LLS was there right away for him to help a bit financially but more importantly to help him understand and cope with his illness.
To the comments related to patient support...that is a goal of LLS. They support and educate patients and their families AND support research concurrently. That said, the focus is and should be on research because that's what will save the most patients in the future. Within patient services, I'd argue that emotional and educational support are much more valuable than a check for medical expenses anyway.
My brother lost his battle to leukemia in 2010 and I've been team captain of his Light the Night Walk team since, raising about $38,000 to date. I serve on the fundraising committee for our local walk and have had exposure to nearly every employee at the Maryland chapter. The people who work at LLS are amazing because they are so committed and vested in the cause. It's not a job to them; it's their life work.
With regards to the comments about the CEOs pay...please don't let that deter you from donating. The fact of the matter is this: CEOs at private companies make a lot more. The CEO of a nonprofit has the same skill set and he/she chose to take a considerable pay cut to work for a charity because they believe in the cause. We can agree that they shouldn't have the same pay as for-profit CEOs but at the same time, like it or not, you have to pay if you want to attract top talent. I think John Walter has done a great job as CEO since his appointment in 2008. He deserves every penny he's paid.
LLS is just an amazing charity for a great cause and I'll continue to support them until cancer is cured.
If I had to make changes to this organization, I would...
Continue to market the organization in a financially responsible way - more people need to know about LLS.
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4 people found this review helpful
I felt compelled to make a comment after reading a patient's review below. She was upset that she did not receive financial help from LLS while she was going through her treatment. This organization's goal is NOT to give financial aid to patients. Their goal is to fund blood cancer research. So, while they may not have given you money to help with your medical bills, how would that have helped the thousands and thousands of others who are suffering from blood cancer? They can do the most good and help the most people by donating their money to research to find a SOLUTION to the problem...not funding medical expenses the problem creates. This is not to sound callous - this is a fact. The push for money is to fund research, it's that simple.
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5 people found this review helpful
I saw the 1 star rating by Jessica Simpson whereas I give it 4 stars as the only problem I see with the LLS is that their fundraising costs are a bit high but administrative costs are very reasonable for an organization this large. Her contention that the director was getting paid 3.6% more than the director of the American Red Cross didn't sit too well for her and she has decided to cross the LLS off her list for donations.
That is regrettable!
My daughter has Non-Hodgkins Lymphoma and has directly benefited from research funded by the LLS as well as received some minor funding for medical treatment. If you look at this page, http://www.lls.org/aboutlls/researchsuccesses/, you'll see that Rituxan is one of the drugs that came from research funded, in part, by the LLS and it is one of the drugs that has helped my daughter.
I participate in a local Light The Night Walk campaign in honor of my daughter and see the direct work of LLS workers. Many of them have family members who have blood cancers so it's just not a job to them.
So please do not let one bad review for a minor disagreement stop you from contributing to one of our great charities.
If I had to make changes to this organization, I would...
Reduce fundraising costs, if possible.
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