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.
My brother is diagnosed with Leukemia and needs a bone marrow transplant. We are from Ethiopia and none of the hospitals in Ethiopia gives that treatment. He needs to go outside if the country immediately and gets the treatment
Please help me save him as he has two children underage and all dependent on him. He is an assistant professor at the biggest university in the country with a PHD from a Canada and Masters in Sweden, biologist specialized in fishery.
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
Review from #MyGivingStory
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.
Review from #MyGivingStory
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.
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.
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.
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.
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.
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.
This is my ninth year as an active TNT volunteer, and in my opinion the organization does an excellent job. Not perfect, but none of us are. Have many friends who are Blood Cancer survivors, some who have not been able to survive. The work of LLS with patients and their families is superb, and the support of new drugs and therapies is outstanding.
My "family cancer" is pancreatic, and unfortunately there has been less success in that arena. My wife and I work with LLS in part because we see success, and also hope for cross-over to other cancers.
I contribted to this organization on and off for about 10 years. However, I recently began using Charity Navigator to screen and filter my contributions. Upon reading the reviews for LLS, I was drawn to the compensation of the director, which is at $519,000.00. Now, as a comparsion, I looked up the compensation for the director of the American Red Cross, at $501,000.00. Not only does the American Red Cross pay their director less, but the scope of services provided and scope of responsibility for the ARC cannot compare to LLS. I have decided to cross LLS off my list.
Review from CharityNavigator
I have lymphoma, have attended the local LLS support group for blood cancer (the only one around), am a first connection volunteer who has called newly diagnosed patients, have attended the excellent Highlights of ASH (annual blood cancer conference) shindig in San Francisco, have visited local political representatives with the organization, and am a multi-year Team In Training (TNT) participant. I recently spoke as a patient at Stanford Hospital - where many doctors are supporting and speak highly of the organization - they have a Stanford hospital TNT team.
The local San Jose office staff are great in my opinion. The organization is the major blood cancer advocate in my area.
TNT is a good thing. I don't like asking for money and have felt guilty about benefiting from LLS sponsoring trips to potentially far flung locations. That said, most of my events are local (Wildflower), I drive to them, and sleep on the ground in a tent, but I also went to Hawaii. I also donate and my company matches, participants can donate their own $'s if they feel bad about administrative overhead. I guess 25% overhead is normal, but I'd like non-profit overhead to be 0% like everyone else, but we have to live in reality, local staff don't seem overpaid. I'm also not enamored of high CEO salaries, but I'd probably have to say that most CEO's in Silicon Valley have better salaries, but they're not running non-profits.
Best for TNT is that in addition to helping patient, it also get participants off the couch, into good shape, and significantly improves participant health. So they help patients, raise money for research, whip participants into shape, etc. What's not great about that!
One of the other reviewers is correct, you can't swing a dead cat in the Bay Area without hitting a TNT'er. Go Team!
They've improved my life. I brought my entire family to Hawaii (on my dime of course) and hence even my wife and kids are heartier, healthier, and sexy as hell:-) Now my 16 year old son is biking with me and will go to Wildflower (I'm paying) with me this year. He's wearing an old TNT jersey of course - his only biking top!
I've been a TNT honoree (cancer survivor) every year I've participated. My blood cancer isn't curable, but it seems to be stable. I hope to participate for many more years.
I'm not a charity expert, but I have worried about this, did my own investigation (e.g. reading all these reviews) and my take is:
* LLS is as about good as most charities from an overhead standpoint
* Of course training and sending loads of people to events is overhead, but it's really good overhead.
* Most of my friends are going to donate to charity (Go Friends!), LLS is as good a choice as any
I judge things in life by the rule would it be good if everyone did it or no one did it. By this rule littering is bad, spending more time with your children good, and TNT good. If everyone did TNT we'd all be in better shape, live longer, and health care costs would go down - that's before any of the funds raised go to research and patient services.
It's not easy to get fat Americans off the couch. I know my couch is pretty comfortable. As soon as I ask my family/friends to donate to my TNT fundraising my fate is sealed, I have to do it. That's the kind of positive peer pressure we all need. I ran to work today, without my TNT event looming over me I would never have done that. My big, fat, gas guzzling SUV sat in the driveway all day. I should park it on the couch:-)
Review from Guidestar
I have donated to this charity from time to time. I would like to help those with CLL in particular. I don't want to contribute to the half million dollar salary the CEO is taking. I'm glad I found out about it. Good grief. I'm going to look for a better place to donate.
In reading the posts on LLS, it does not surprise me a bit. I am a former employee of LLS. Just over three years ago, shortly after the current CEO was put in office, the company made an about face and overhauled the company nation wide. The corporate office let many of the staff go and re-hired new staff at many of the offices throughout the country. In many offices, entire staff were treated terribly and all were let go. New employees pushed hard to get money out of patients families and local businesses. Empathy appeared to go out the window with the management change. In my office, I personally witnessed Godly people who truly cared about suffering patients and their families get replaced by cold money grubbing staff who followed the new direction of demands sent down by corporate office; to fundraise fundraise fundraise. The push to raise money was suddenly NOT balanced with putting the money raised back into the community to meet the patients needs. I personally witnessed the financial aid program and other programs get slashed to the bone while the new staff pushed and pushed families, donors and businesses to donate large sums of money. The new focus was not on the patients but on fundraising. Watching programs get demolished before my eyes and patients being deceived was unbearable. . I have worked for non-profits most of my professional career. I was very proud of LLS and their professionalism when I first began to work for them. However, it was extremely painful to watch a good agency fall apart in such a short period of time after the new CEO took office. I cried....not because I lost my job, but for the patients I was helping that I knew were being cut off from deserved services.
I have volunteered & participated with this organization for several years, each time expecting, hoping for something better to come out of their research and fundraising events...but it all seems to be going downhill. I'm also an avid marathoner and have noticed that a lot of there Team in Training events have not been up to par with their competitors. Many other organizations (The American Cancer Society (DetermiNation Campaign), have a much superior presence at the same events and I don't feel the that same "special feeling" to be a part of The Leukemia &Lymphoma Society. My friends and I are now choosing to donate ($ and time) to other organizations and are saddened that the organization has lost so much over the years.
I used to contribute to the Leukemia and Lymphoma Society until I learned some facts. For those of you who feel your contributions and Team in Training efforts are helping to "cure leukemia and lymphoma" please check the publicly reported compensation of the CEO John Walter with other not for profits. For example, the CEO of Save the Children had total revenue of $540 million to manage. And, 90% of all expenditures went to Program Services. The CEO of Save the Children earns a base salary, according to the filed (and public) 990 form, of around $390,000. John Walter of LLS earns a base salary of over $500,000, which it reported lost $3.7 million last year and has total revenue that is hundreds of millions less, with around 70% going to “Program Services”. Recently the LLS Board ended the role of the SVP Marketing and Communications because of the poor results. Why hold only one person accountable for these results? These poor decisions started at the top. Maybe it's now time for the LLS Board to hold Mr. Walter accountable for running this once fine organization into the ground. I feel cheated. An outrageous base salary for a losing effort?? You might want to consider where your money is going too.
Review from CharityNavigator
I was incredibly disappointed with this organization. I have ALL and have participated and fundraised for this group and will NOT continue to support this organization. When I relapsed after my first umbilical cord transplant, it was such a burden on my family that I sought out assistance through their website for the "Copay Assistance". I was told "you have the wrong kind of leukemia. There is no funding for that type." Are you kidding me? I didn't get to choose my "type" of leukemia. After being told this by their main headquarters, I called the local branch and received was told to apply for the $125/year they offer to patients. Since I was not able to receive disability (didn't qualify due to I was a stay at home mom for 12 years trying to raise my kids and told we made more than the $1000/mo allowed to qualify). I have not personally seen any of my cancer friends "helped" from this organization. I've only seen the money flow in from all the Team in Training and fundraising for all their events. I, being a leukemia survivor, do not see that they help the patients as stating they do. I've gone through this twice and was deparate (I am a very proud person that would NOT ask for help if I do not need it and would prefer not to ever need it) at the time I was trying to reach out. I would give to the local blood banks or to the American Cancer Society or to a smaller non profit doing good in the community. Every time I get a call from them for fundraising, I explain in detail WHY I cannot support their organization. I wish I could. I am currently working with my local blood bank and will give back to them. I see the benefit of the works of the blood bank far more than the LLS.
My son was 49 years old when he was diagnosed with AML. He was told he had a 25% chance of survival. He underwent severe treatment to get him ready for a bone marrow transplant. Luckily his own bone marrow was collected and harvested after his hard sharp treatments with chemo. It worked for him!! He has passed the 5 year mark, and is considered cured!! He is now 55 years old and feels that the research done prior to his experience with leukemia at least gave him a chance to live. He wants to give back to the people now going through the tough times with blood cancer treatments, and the research being done every day. SO YOU WILL FIND HIM, A SURVIVOR, AS A MEMBER OF TNT FOR A 100 MILE BIKE RIDE. He has been harshly training twice a week since February. He is a very generous man to do this. It is also very hard to ask for donations from friends, but he believes in LLS, and knows that some day they will come up with the answers to cures and even prevention, and hopes for patients and their families. (I wonder if you have statistics on how many participants are actually survivors of blood cancers.)