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Voices of LLS
Just a few of the stories inspiring us right now.
Phil
My Story
My sweet and wild 3-year-old son, Phil, was diagnosed with B-cell acute lymphoblastic leukemia (B-ALL) in the midst of the holidays in 2019 on December 27. Phil began treatment right away, following a 2½-year treatment protocol for his leukemia type and risk level. With every hospital visit, chemotherapy infusion, medication to take, procedures in the OR, or “job” he was told to do, Phil smiled, he laughed, and he cooperated (with a little encouragement and bribery of course!). There really was something so special about him. Phil was scheduled to end treatment in March 2022, but just two months before, on January 7, it was confirmed that Phil’s leukemia had returned. Our hearts were broken, and the fear of relapse that lived deep within us became an awful reality.
For the next eight months, Phil was hospitalized while he was given a variety of chemotherapy and immunotherapy combinations and endured side effects and complications from those treatments. Genetic testing provided Phil’s team with new information about an abnormal amount of mutations in his leukemia. There were also a few notable mutations that were known to be treatment-resistant. We were once told Phil's survival rate was 90-95%, but now his prognosis no longer looked so promising. Phil’s medical team continued to work tirelessly to find a cure, but in August, all reasonable options were exhausted, and we were told there was nothing more that could be done for our brave boy. Phil was brought home where he enjoyed 10 beautiful days with his family before he was called to his eternal home on September 1, 2022. I don't think it is a coincidence that Phil passed away on the first day of Childhood Cancer Awareness Month. I have promised to continue Phil's fight and the fight of all children who still need a cure.
Phil was a bright light to everyone he met. He had a deep belly laugh and the best smile. He loved his brothers, cousins, Legos, superheroes and “bad guys," and bacon, but we believe his most favorite thing was the outdoors. Being Phil's mother is a gift I am eternally grateful for.
Due to COVID, our involvement with The Leukemia & Lymphoma Society (LLS) was limited at Phil's initial diagnosis. LLS then became an active support for us after Phil's relapse when a patient/community outreach team member connected with me. She remained involved during attempted treatments, after we learned of Phil's terminal diagnosis, and after Phil died. It was a comfort to have someone check in on us and offer her love and support. I was then asked to become a Dare to Dream Ambassador and have just begun the onboarding process. I am grateful for this opportunity and look forward to becoming an active participant in transforming the treatment and care of kids with blood cancer!
Written by mother
Aiden
My Story
I am writing to share about my son, Aiden, who is our real superhero and has superpowers that shine bright through his love of dance. From a very young age, we considered Aiden to be our gifted child. He has a free spirit and loves to connect with the world and others in it. His parents have taught him to "dream big" and "reach for the stars" and he can do whatever he puts his mind to.
In 2016, at the age of two years old, Aiden was diagnosed with leukemia and given three days to live. What the doctors didn't factor in is his resilience. His white blood cell count was over 750,000 when he was admitted. Immediately, the doctors had to start chemotherapy and dialysis (filtering out his white blood cells to normal levels) by passing clinical trials and stabilizing Aiden.
After a rough month into treatment, Aiden went from "three days to live" to the "miracle baby" on the third floor to the warrior, survivor, and now a community advocate. With every beat, Aiden was always on his feet dancing during and after treatment. Throughout his treatment, he continued to dance and strive in the performance arts.
Aiden is a social butterfly who loves to hang out with his friends and family and had gained 1000s who support him and the journey he has overcome. Aiden loves to stay active by celebrating life with his positive energy from karate, swimming, bike riding, singing, and dressing up like superheroes. He loves to travel and try new food, and he enjoys new experiences – attending concerts and theme parks is what makes him smile the most. Aiden is very talented it seems like he is good at everything he puts his heart into including sports, dancing, and public speaking.
Aiden was recently featured on a local news station news for fundraising for The Leukemia & Lymphoma Society (LLS) raising over $10,000 for research. His classmates were so impressed with him being on the news.
Aiden is now in the third grade and surrounded by a huge support system from his family, friends, teachers, doctors, and social workers who continue to work with him in providing preventive care in being proactive due to some of the side effects from treatment.
Aiden and his family are also huge community advocates as they were nominated as candidates for the Visionary of the Year Campaign through the LLS Northern California Sacramento Region.
Aiden would love the opportunity to touch someone or aid in saving lives by telling his story through dance about how he survived cancer.
With every eight counts, as he dances, Aiden will continue to spread his light to everyone around him.
Tim
My Story
I knew multiple myeloma (MM) was a blood cancer. After all, my mom was diagnosed with myeloma at 62 years old in 2005. It’s extremely rare that I should also be diagnosed in 2021, but it happened. There’s no strong data that shows that it’s hereditary at this point. But more doctors are seeing family members being diagnosed. It's also becoming one of the most diagnosed cancers among African Americans.
I have been in good shape for most of my life, so when I had the injury, I was like, "I just have a crick in my neck, it's not a big deal. Lifted too many boxes this one day; it'll go away." Initially, it did. Then it stopped going away, and then I couldn't get out of bed. I said, "Wait a minute, this is not normal." Who knew that I had a neck fracture that would lead to a cancer diagnosis? I knew the injury that I had was going to require neck surgery, and it was a required emergency surgery. But the neurosurgeon said, "Yes, you have to have the neck surgery, and it's urgent, but you also have cancer." I repeated "What?" three more times, and then I broke down. After I got off the floor, I got back up, and we discussed it. The doctor said, "The cancer is attacking your bones in your neck and your lower back. I need you to go right now to the hospital and check-in." I left his office, and I went to the hospital. I got a bed that evening, and I was in the hospital having surgery that Friday. I had two surgeries. They had to put a metal plate in the front of my neck to stabilize it because if I hadn't had the surgery, I'd be paralyzed from the neck down. Then four days later, the plate fused. It was called a thoracic fusion. They fused the back with titanium screws and rods to the front and that's what saved me from being paralyzed. But what was even crazier, the next day I got there and the oncologist at that point thought I had possibly two more cancers. It was just that quick. There was no sign at all. I go to the doctor every year for a regular physical, and there was never a sign in my blood or anything that they saw that could've picked this up. I don't know how you look for that in bloodwork and test results, but they never saw anything.
After these surgeries, I had to go into radiation treatment right away. I did two weeks of that every day. And after that was completed, the next thing was to start my chemotherapy treatments going forward. My neurosurgeon, Dr. John-Berry Candelario, and oncologist, Dr. Patricia Kropf, took great care of me. We thought the neck surgery was successful, but after a few months, I went back for a follow-up, and we saw two of the top screws had come loose. They gave me a more restrictive brace called a SOMI (Sternal Occipital Mandibular Immobilizer) brace. And it was very mechanical looking, so I was called the Six Million Dollar Bionic Man by my friends.
Once I left the hospital, I needed a caregiver to be available 24 hours. My brother Tony moved in with me without hesitation. My entire family (my father Sidney, my mom Loretta, and my sister Stefanie) rallied around me to assist with all the resources I would need during my recovery. But the most important resource we had was our faith in God. We're all faithful servants and truly believe that He continues to bring us through any adversity.
I received financial assistance from The Leukemia & Lymphoma Society (LLS). My social worker, Susan Berry, informed me of different things and programs that were available that I could use that would help me financially because, again, so many folks go under financially because of not knowing what their resources are and not having an advocate. Between getting the travel expense card and gas cards, she was able to get me so many different things through LLS that helped me not worry about a financial burden. That's the last thing you need to worry about when you're going through a life-threatening illness is how you're going to pay a bill. And that's a bigger conversation as far as healthcare in general. But she was there and got me the right resources that I needed at the right time. And so, that was the power of it, speaking up and asking and knowing what to ask, and then having a good advocate you could communicate with who is going to do their job. I just thank God that I had someone and several people in my corner who cared about me.
When you get over 50, your body talks to you a lot more. And you need to start listening to it because it'll tell you when you're tired or when you ate the wrong thing. And after this, I listen all the time for little things, and I track when I have something, "What did I eat, what did I have that day?" to see if this thing may have caused this reaction. You have to really listen, know your body and be proactive. If you can't find an over-the-counter solution, seek your doctor's advice and expertise to help you figure out what it is. It comes back to getting regular checkups. Maybe at a certain age, you go more often to track for prostate cancer or other cancers for example. That doesn't show up until you almost succumb to it in some cases. It is important to communicate with your doctor, knowing what questions to ask, and if you don't know what to ask, have an advocate with you because so many folks get overwhelmed.
I had multiple treatments including chemotherapy and stem cell transplantation. I thank God that I had technicians, nurses, surgeons, and nurse practitioners who cared. It was genuine, and it made everything that I went through at every step of the way that much easier. I mean it comes down to the decision to live and to not be consumed by it. I think a lot of folks hear the “C word” and think it's over. That's what I thought. But after reevaluating, looking at my mother was my direct line of reference. And for me, it was to not just survive but to thrive. So, I would say after that comes the ability to thrive, but you must embrace that. If you're not willing to embrace that, then it's not going to come to you. I'm still walking through that journey. As I say these things, it's reaffirming to me what my purpose is, how I'm going to do this myself, and how my story can help somebody in a similar situation.
Tawilhua
My Story
My name is Tee, and I am a survivor of multiple myeloma (MM), a rare blood cancer. Before my diagnosis, I was an active principal at the school where I worked, was involved in my community, and lived a life of purpose. And then I was diagnosed with the “Big C.”
Today, I still have a purpose-filled life, it simply looks different than before. Telling my cancer story is a part of living a fulfilled life after a cancer diagnosis. So here is Tee’s story.
The first moment I can recall feeling like something wasn't right was a day in May. While brushing my teeth and cleaning my tongue, I gagged. Then, I heard a loud crack in my head. I asked my husband if he had, in fact, heard the crack in my head, but he said no. Suddenly, I felt the room moving and became overheated. I quickly lay on the bed. Despite the abnormality of what I was experiencing, I felt better after a few minutes of lying down, put it out of my mind, and went to work.
In June, my husband and I traveled to my cousin’s wedding in Los Angeles. When the dancing began (the best part of any wedding), I was prepared to spend the rest of the evening on the dance floor. A song I love came on, and I quickly made my way onto the dance floor, ready to shake and shimmy my heart out. But I got up there, and I couldn’t move. I peered down at my unmoving feet and noticed they were swollen and stuck in my shoes. The following morning, my feet returned to their normal size, and we headed home. Arriving home, I felt exhausted but put it down to travel and work and continued life normally.
After all the odd symptoms, my sister, Yadira, recommended that I go to a doctor. I dismissed that there was something wrong with my body, but I did visit my chiropractor. I went in complaining that my back and legs were hurting. He adjusted me, but I was not feeling any better. Again, I put it down to stress and simply having too much on my plate. Looking back on it now, I was getting glaring signs that something was wrong with my body, but I thought it was just fatigue.
All through July, I was exhausted. By August, everything had come to a head. My husband and I had decided to go on vacation for a few days before school started. We boarded a plane in Texas to reach our connecting flight in South Carolina. I felt tired as we boarded the plane. But when we landed, I started to feel so much worse. I struggled to walk and felt like I would pass out while making our way to the next gate. I told my husband I needed to stop for a second. After taking a minute, we tried again. I was nervous about making it through the connecting flight, but I pushed through and boarded the plane. When we landed and made our way to the rental car, I felt I would pass out from sheer exhaustion. I struggled to climb into the rental car. We arrived at the hotel, and I could not get out of the car. My darling husband rounded the car and placed my arms around his neck, and we took slow steps to the hotel room. A short walk from the car to the hotel room took 20 minutes, but he patiently repeated “Take your time, baby.”
Once we reached the room, I was deeply uncomfortable and in pain. My back and legs were killing me. I struggled to sit on the bed because it was too high. I couldn't sit on the toilet because it was too low. I did find some solace on the hotel room couch. My husband made it up for me to sleep in, and that is where I fell asleep. However, sometime during the night, the pain got so bad that I asked my husband to drive me to the hospital.
What should have been a straightforward process to getting some pain relief and help was anything but. We would make multiple trips to the emergency room on that vacation. When we reached the emergency room for the first time, I began to cry because I was in so much pain; my back was killing me. The hospital staff assessed me, gave me painkillers, and sent us home. But the pain didn’t get any better. The next day, I asked my husband to take me back to the hospital. Again, I was assessed and given painkillers. I was sent home without taking an X-ray or blood work. We returned a third time with the same results.
I wasn't sure I could cope with the flight home. My husband suggested we drive back to Texas instead of taking a flight. In tears, I said no. I’d rather take my chances with a four-hour flight home than sit in a car for 24 hours.
Once we landed in Dallas, I wasn't able to walk. Once home, I only wanted to lie down. Once I'd laid down, I quickly realized I needed help and asked Cavangh to take me to Urgent Care.
We went, and I was assessed, and, yet again, given painkillers. I returned to the hospital two more times before getting any effective help. My sixth visit to Urgent Care was when a doctor finally helped me. They said, “You have been here several times in the last few days, but we don’t have any drugs strong enough for your pain level.” At first, I believed they thought that I was seeking drugs. But this was the first doctor to take an X-ray. Once she had done this, she noticed something was wrong with my back. She told me I would need an MRI and scheduled me for one. However, I never made it to the scheduled MRI. A few hours later, my husband rushed me to the emergency room. We chose to go to the county hospital because I had no luck with the other emergency rooms.
I was immediately registered into the county hospital system. They drew blood and took a urine sample. After being seen, I followed the nurse's instructions, who told me to sit in the waiting room. After waiting a short while, an orderly entered the waiting room, yelling my name and pushing a wheelchair. They ensured I was the right person, bundled me into the wheelchair, and admitted me into the hospital. I was hooked up to many machines when I woke up in my hospital room. The attending doctor entered and asked me a startling question, “Ma’am, have you been in a car accident?” I responded, “No.” The doctor told me I had broken my T9 and T12, and surgery was required.
The following day, I was wheeled into surgery for a kyphoplasty procedure to fix my spine. Once the surgery was over, the nightmare diagnosis was only just beginning. A doctor in cowboy boots walked into my room and dropped a bomb much worse than a broken back. He said, “We believe that you have a form of cancer.” I couldn't take my eyes off his cowboy boots. I could only say, “Only tell me when you know for sure.” He then explained that my kidneys were not functioning fully, and my blood work was completely out of whack. He explained that I would not be here today if I hadn't visited the hospital within a few more days.
After an extended hospital stay, I had a follow-up appointment. There I was given the official news, “You have cancer.” I burst into tears. I was crushed, shattered. I could not hear anything beyond those damning words. I managed to mumble out two questions amidst the tears.
Number one: How long do I have to live? Number two: How did I get this?
Cowboy boots answered my questions. He said the lifespan of a person with MM is five years. And getting it was just simple “bad luck.” He said that I would need to start chemo treatments the following day, which I did. That's where an entirely new way of life began for me. My diagnosis is something I am sharing with the world to bring awareness about MM but to also bring some hope to cancer survivors about finding purpose within an entirely new way of living.
Samantha
My Story
In February 2023, I was on top of the world. I turned 27 years old, I was training for a new position at my dream company, I spent an amazing weekend in Nashville with girlfriends, and had just touched down from Mexico after spending a fantastic weekend with one of my best friends. Everything felt right ― for the most part. While this month was filled with love, laughter, and good times, it was also filled with night sweats, stomach pains, and overall feelings of illness.
In March 2023, I was knocked off the top of the world by the words “stage 3 aggressive B-cell non-Hodgkin lymphoma (B-NHL).” Those night sweats and stomach pains weren’t just bad food and a typical GI bug. When I first went to the urgent care that Sunday afternoon, I was never expecting to be transferred to the hospital that same night and told that it wasn’t a matter of if I had cancer, it was a matter of what type. Words like lymphoma, upper stomach, and cervical cancer were thrown around like a baseball. It felt like I was standing still in a room with everything spinning around me. After weeks of tests, scans, and biopsies, we had a winner, lymphoma.
Within a week of my diagnosis, I had a port inserted, I was admitted to the hospital and began treatment. The plan wasn’t for treatment to happen in the hospital, but due to how sick I had gotten, I needed additional monitoring. My organs, specifically my kidneys, were about to take a big hit, and my team wanted to make sure I didn’t develop tumor lysis syndrome. Additionally, my cancer was spreading rapidly, and I needed aggressive treatment. Back in November 2022, I had a CT scan for another health condition which specifically stated “no lymphadenopathy.” Fast forward three months, and I had widespread malignancy from my neck to my groin. I would come to learn that fast growth is a characteristic of lymphoma. The first round of R-CHOP was one of the worst experiences of my life. I had never been so sick in my life, and I honestly wondered how I was going to go through five more rounds of this.
Following the first treatment, the looming side effects started to present themselves. First up was hair loss. I went from having hair past the middle of my back to a bob to being bald. Next up was weight gain. The steroids I was on added 15+ pounds to my figure. From there things kept piling up. I spent 18-20 hours sleeping post-chemo, I developed thrush and mouth sores, and my energy level was non-existent. This was hard stuff.
But I did it! I completed five more rounds, and in August 2023, my cancer went into remission. I was in such a fight or flight mode during treatment that my processing is just now beginning. I’m not sure what the future holds, but I am so thankful for this second chance and opportunity to live a new life. My #1 goal is to live my life more intentionally. Having cancer at such a young age truly opens your eyes to what is important in life and allows you time to change where your path is going. I can’t wait to get back on top of the world!
David
My Story
My name is David, and I am a personal trainer/sports performance coach. I have had the privilege of working with youth athlete Zac in the gym for the past couple of years. Last year Zac was diagnosed with leukemia, which was very heartbreaking for me to hear. However, I have been extremely touched and inspired by Zac and his fighting mentality and positive spirit as he has battled cancer. He has made it a priority to continue exercising while fighting something greater than himself.
I decided to put on a fundraiser workout in honor of Zac and The Leukemia & Lymphoma Society (LLS) because I wanted to help share his story with people who may be struggling. It was really touching and cool to see the support we had at the fundraiser workout and to bring the community together to get a good sweat in honor of Zac and LLS.
Stefan
My Story
Not that long ago, leukemia was an invariably fatal disease. These cancers presented with such ferocity and aggression that in many cases patient decline was rapid, usually within weeks of initial diagnosis. This all changed in the 1940s when Dr. Sidney Farber pioneered the use of antimetabolite chemicals as a means of killing leukemia cells, the birth of the chemotherapy revolution. While these early agents only led to brief, tantalizing remissions, the seeds of a greater concept were sown; this was the first proof that we could systemically target and eliminate leukemia by exploiting its dependence on certain metabolites, or the fuel cancer uses to grow, by targeting these pathways with drugs. This idea has strongly stuck with me and has formed the basis of much of my professional career thus far.
Unlike many of the other incredible stories shared by The Leukemia & Lymphoma Society (LLS) on behalf of patients, caregivers, volunteers, and advocates, my introduction to the LLS family was slightly different. I am a cancer researcher focused on aggressive blood cancers, specifically acute myeloid leukemia (AML) and am a recent recipient of generous LLS funding for my research under the Research Fellow Career Development Program. I completed my PhD at the Peter MacCallum Cancer Centre and the University of Melbourne in Melbourne, Australia. The focus of my research program was to investigate how certain mutations in blood cells drive leukemia. I discovered that a common leukemia mutation “rewired” cellular metabolism within leukemia cells, making them very dependent on the presence of a particular metabolite (in this case, the amino acid serine) to fuel growth. Most interestingly, I found that blocking the generation of serine using a new class of experimental drugs worked in concert with current standard-of-care chemotherapy. This combination of chemotherapy and an anti-serine drug killed leukemia cells more effectively than either agent alone. This serendipitous discovery had a bit of inherent symbolism for me. While today we have more sophisticated approaches to investigating the cancer cell, my discoveries essentially circled back to Dr. Farber’s seminal observations that we can design therapeutics that specifically target the cancer cell’s ability to fuel its manic growth while sparing healthy cells. It’s not a coincidence that even today many of the agents that form the backbone of leukemia therapy target the cell’s ability to make the raw materials necessary to fuel unrestricted growth.
As such, the journey to my current position as a postdoctoral fellow at the Dana-Farber Cancer Institute was somewhat driven by the romanticism of this institution, Boston, and the U.S. as a whole. I wanted to immerse myself in the place where chemotherapy was born and the place where we have made such enormous strides in leukemia research that we now have certain types of leukemia that are largely curable. Working with my mentor, Professor Kimberly Stegmaier, I’m deploying cutting-edge tools and technologies to identify metabolic pathways that leukemia cells require to maintain their rapid growth. Another, more high-risk question is whether we can identify metabolic pathways that when perturbed allow a leukemia cell to lose its cancerous properties and mature to become a functional, “normal” white blood cell. Having seen firsthand a close family relative suffer from AML (and witnessing the toll intense chemotherapy took on him, the jubilation of his first remission, and the devastation of his inevitable relapse), I am always conscious that the work I do in the lab has the potential to make real, measurable improvements in patients’ lives and their cancer experience.
I am incredibly grateful for the support LLS extends to researchers and physicians as we endeavor to discover new therapeutic options for treating blood cancers such as AML.
Arlena
My Story
I’m 31 years old. At the age of 30 at the end of summer 2022, I was diagnosed with acute myeloid leukemia (AML). The experience I had and am still going through is a battle every day of my life. I was told I had to have chemotherapy, and I experienced hair loss, my skin changing color, and now have very bad stomach problems. I made it through 10 different chemotherapy sessions, and I got a phone call in December 2022 that I had a bone marrow donor. So, in January 2023, I started chemotherapy again, and on January 19, I got my bone marrow transplant. It was the second birthday for me. I have been recovering since then. It’s going on eight months of my recovery, and it’s been a long ride, but I’m pushing and making it through.
Izabella
My Story
When I was twelve years old, I was diagnosed with a very rare type of leukemia found in children. I was life-flighted, had various treatments and procedures, and even had four blood transfusions. As incredibly shocking and terrifying as it all was, I pulled through in only a week of treatment. My type of leukemia is called chronic myeloid leukemia (CML). This leukemia is something that will be a part of me forever. Even still, I take a daily oral chemotherapy pill. Despite all of this, I maintain my path in life and will not let anything stop me. I am strong and would like my story to be heard. I am a 2023 LLS Scholarship awardee. Thanks to The Leukemia & Lymphoma Society (LLS), I am able to pursue a Bachelor of Science degree in Psychology.
Harjeet
My Story
In May 2018, I moved to Edmonton from India with my husband hoping for a new career, a new life, and to start a family. Things were all right at first. Everything was going smoothly; I was living my normal life, but life had different plans.
In May 2019, I began experiencing high fevers with no other symptoms. Weeks passed, and I found myself in the emergency room numerous times. I was told that it was just a normal viral fever and took Tylenol to relieve it.
Weeks passed, but the fever persisted. I visited my general practitioner again and even the emergency room, but there were no answers. I don’t have a count of how many times I went to the emergency room, waited for seven to eight hours, and always got the same answer: “It’s just a fever. You don’t have any other symptoms, so just take Tylenol.” I was on Tylenol every two hours, back-to-back for three months.
I was admitted to the hospital. There, I was treated as a subject to extensive scans, biopsies, X-rays, bloodwork, and even a laparoscopy. I underwent numerous biopsies and surgeries and was seen by various specialists and doctors for two and a half months at the University of Alberta Hospital, but still there were no answers.
I felt like a research patient where every doctor was coming to see me, and no one had any answers.
After three months of being in the hospital, with swelling due to IV fluids, along with continuous fevers, fainting, and ulcers, I gave up. Unable to find any answers in Edmonton, my husband contacted doctors in India who suggested that I should come back to India so that they could examine me in person, and we could get answers.
At the same time, the doctors at the U of A Hospital wanted to do one last biopsy after the endless number of biopsies already done within those three months. It was a skin biopsy, and I was promised that it would be the last one. Exhausted and discouraged, I was reluctant at first. I had so many scars on my body and had gone through so many scans and bloodwork for the past three months, still, my husband said that I should give it a try, and so I did.
After almost three months in the hospital, on August 28, 2019, I was diagnosed with stage 4 subcutaneous panniculitis-like T-cell lymphoma (SPTCL). My diagnosis was complicated by hemophagocytic lymphohistiocytosis (HLH), an autoimmune disease. This form of cancer is very rare with only 150 cases reported worldwide.
I didn’t know anyone with cancer, nor did I have a family history of cancer. Hearing that you have cancer changes your life and the lives of those who care about you. When you’re faced with the greatest obstacle and the only choice is to live, you take a breath and focus. Cancer was a condition I could not control, but the way I reacted was up to me. It was so difficult to take everything in at that time when my doctor said the “C word.” Nobody wants to hear that.
The doctors were rushing me into aggressive treatment right away because my cancer was at an advanced stage, and my health condition was getting worse every day. My husband wanted a few hours to discuss it and take some time to process it. For the past several months, they’d had no answers, and now they learned it was cancer.
I received my first chemotherapy session at the U of A Hospital on August 29, 2019, and the oncologist explained to me the type of cancer that I had and the treatment plan. I had a very rare type of cancer, and they weren’t able to diagnose it until now because the symptoms for it are still insufficient. After the first two of six chemotherapy sessions, I was finally discharged from the hospital.
Chemotherapy itself wasn’t easy, but I was relieved to be finally home again after four months. For the remainder of my chemotherapy sessions, I went to the Cross Cancer Institute. The treatment was somewhat successful but not completely. They suggested that I should undergo a stem cell transplant which would allow me to live a little longer; the alternative was to continue with chemotherapy until my body can take it.
In December 2019, I met with a fertility specialist and was told that my fertility was also compromised, and I was told that I had gone into early menopause. I wonder sometimes that if I had been diagnosed earlier and had been told about potential complications with my fertility, I may have gotten my eggs frozen. I also met with my team for the stem cell transplant at the Tom Baker Cancer Centre in Calgary. The plan was that I would receive aggressive chemotherapy every week in January and February 2020 to put my cancer into partial remission so that my body would be ready for the transplant. Whether I would survive or not, I just wanted to pass over this process that was happening, my thoughts at that moment.
In January 2020, I lost my right eye vision due to CMV retinitis. I felt disappointed that no one took me seriously at that time even though I tried reaching out to my team and went to the emergency room.
The stem cell transplant took place in April 2020 during the height of the COVID-19 pandemic. As a result, I was isolated for 32 days with a strict, no-visitor policy. The stem cell transplant was unbelievably tough for me without having my family around for support. But with my younger brother being my 100% donor match, it was ultimately successful. Being in the hospital by myself, I wondered whether I would get out alive or not. I was just fighting for my life every single day.
Fortunately, the stem cell transplant was successful. However, it wasn’t easy due to the amount of stress and changes to my mental health and physical appearance. This whole experience has given me a new perspective.
My amazing husband and family got me through those tough times. It’s been a long journey to get here. At some points, I felt like this day would never come. But here I am, getting better every day and living my life. I accepted that this is my new normal, and I’m trying to live each day. I was lucky to get a second chance at life.
It’s been three and a half years since my cancer diagnosis, and it will be three years in April 2023 for my stem cell transplant. I am currently NED (no evidence of cancer) but do go for my follow-ups (three months for bloodwork) and PET scans every year.
Every story is different, and every journey is different, but if we have that strong willpower to live and survive this, we will do it. I know it’s difficult, but we have to. I feel happy if I'm at least able to help others and bring change to those dealing with cancer in our social community.
Samantha
My Story
I was diagnosed with cancer in January 2023. We initially thought it was a misshapen aortic arch until I got an echocardiogram. After I was formally diagnosed, I told my friends. I underwent surgery, and my friends and family came to visit me once I was awake. I was set to be in a runway show before I was diagnosed, and I decided to still walk in it. I dyed my hair purple before the show so I could raise awareness on the runway. This is when my modeling career began, and I began to gain a following on TikTok.
My grandma, a close family friend, my mom, and my aunt also got tattoos for me. One of the most impactful moments for me was when we decided to have a "head-shaving" party. Almost my entire grade attended, and almost everyone dyed their hair or shaved it for me. My school hosted purple Tuesdays where everyone wore purple and showed up early to hang out. My friends from other states who I hadn't seen in years flew out to see me.
I got chemo once every two weeks for four months. Once I buzzed my hair, I continued to do photoshoots where I also showed my port scar to show other patients and survivors they could still be beautiful with scars and hair loss. I was signed with a modeling agency during chemo. My mom and I also began to hand out stuffed animals to other children in the blood disorder ward of my hospital. After four months. I was officially in remission and able to ring the bell. However, I plan on continuing my advocacy and modeling with a shaved head.
Samantha
My Story
Hi, I’m Samantha, and I am a pre-B-cell acute lymphoblastic leukemia survivor (B-ALL)! I was diagnosed in October 2018, the beginning of my junior year in high school. Before being diagnosed, I missed about a month of school due to being sick. I was misdiagnosed three times before they found out I had B-ALL. When I was diagnosed, the doctors told my parents and me that if it had been undiagnosed for a day or two more, I wouldn’t have woken up, and my parents would’ve found me. I’m so lucky it was found before it was too late. The hardest part about going through chemotherapy in my opinion was losing my hair not once but twice. My junior year of high school ended up being online due to being in the hospital constantly.
On Valentine’s Day 2018, I had a side effect of my treatment that caused me to have stroke symptoms such as no control of my left side, slurred speech, couldn’t walk, and my body moving like I was having seizures on my left side. This side effect only lasted about 24 hours which I am so thankful for. Still, during my junior year, I got to go on my Make-A-Wish trip with my family! I picked going to Disney World, and we all had the best time!
In May 2019, I was out with family and got a really bad headache. I threw up over 56 times on the way to the hospital where I went unresponsive which caused a code. I had an MRI where they found a blood clot on the left side of my brain. After they found the blood clot, they brought me to the operating room to surgically remove it through my groin. I was in the hospital for a month after having that surgery, and I couldn’t tolerate light, sound, or smell, and I was hardly eating and constantly sleeping. My doctors and nurses called me the mystery child; if there was a rare side effect, I got it.
At the start of my senior year of high school, I got to attend in-person classes the first two days before I got sick and was hospitalized. Most of my senior year was online, as well as my junior year. In March of my senior year, COVID-19 occurred. School was out, and classes were not required. I didn’t get my senior prom, and graduation was a month late (grateful I could even attend). The year 2020 was rough, not only for me but everyone.
On February 4, 2021, I got to ring the bell and finally call myself CANCER-FREE! I am 2½ years cancer-free and living my life the best I absolutely can without taking anything for granted. I am so lucky I had an amazing community and support system through my whole 2½ (basically three) years of chemotherapy. I hope every day that I don’t relapse so my family doesn’t have to see me go through that tough experience again.
Thank you for taking the time to read my story.
Jaziel
My Story
Hello, my name is Jaziel, and I am a three-time leukemia survivor. My story began in 2008 when I was initially diagnosed with acute lymphoblastic leukemia (ALL). I was treated for a few years and became cancer-free (remission) in 2011. During my first battle with cancer, The Leukemia & Lymphoma Society (LLS) helped me and my family immensely by assisting us with rent, gas, and sometimes simply sharing the stories of other survivors, encouraging me to keep fighting.
During my journey with cancer, what kept me going or my mantra was a saying my father used to tell me every day “un dia a la vez” which translates to “one day at a time.” Hearing him say those words to me would remind me that I still had power over my body. Whenever I had a treatment or invasive procedure, I would whisper that saying to myself, and immediately after, I knew everything was going to be okay.
Shortly after becoming cancer-free, I relapsed, and my only treatment choice was multiple rounds of chemotherapy and a bone marrow transplant. Luckily, my siblings were a match for me. I had my first bone marrow transplant in 2012, successful for eight months before I relapsed. At this point, I was 13 and knew what was happening with my body and what cancer meant. I was exhausted and had no will to keep fighting. However, one of my nurses shared with me that in the past she was also a pediatric oncology patient and survived cancer just as I was going to. Her story, plus the support of my family, encouraged me to fight this battle once again. This time, another sibling of mine was my bone marrow donor.
During my last fight, I vowed to myself that I would become a nurse to become a beacon of hope for children battling cancer. As of June 2023, I am officially 10 years cancer-free and a registered nurse, hoping to pay it forward and provide the same comfort and care, my medical team, gave me during the most challenging times in my life. Thank you.
Cooper
My Story
I am Cooper, and I am a leukemia survivor. I am 26 and creating businesses around the creativity space. I am a healer and author of multiple books. I was diagnosed with leukemia at the age of seven. I did treatment for 2½ years with chemotherapy. I have been in remission for 16 years. I am grateful to be here. I have donated around $100,000 to The Leukemia & Lymphoma Society (LLS). I have done Pennies for Patients (PFP), Student Of The Year (SOY), and been an Honored Hero for multiple events. My high school raised $10,000 in one week for PFP. I played football in college at Quincy University and did SOY my first two years. I raised $25,000 in my first year and $50,000 in my second year. I’m most grateful for the events that LLS puts on for people. I’ve gotten to meet some special individuals and cancer survivors. I have met kids who conquered blood cancer, and those are moments I will never forget. As a spiritual healer, I owe the world service. That service is to raise the vibration of the earth through creative endeavors.
Janet
My Story
I was diagnosed with acute myeloid leukemia (AML) at the age of 28, and our firstborn son was four months old. I am currently a 36-year survivor, married 41 years with four sons, four daughters-in-law, and eight grandchildren.
Robert
My Story
I was diagnosed with chronic myeloid leukemia (CML) in February 2021 after a bone marrow biopsy. Since that time, over the past 2½ years, I have had very serious side effects from my chemotherapy medication treatments. I was first prescribed Gleevec® 400 mg in March 2021, my first tyrosine kinase inhibitor (TKI). However, this medication put me in the hospital at the end of March 2021. I had an angiogram to check my heart as I had five stents in my heart in September 2018. I had very severe fatigue and very serious malaise. I was then put on the chemotherapy medication Sprycel®, my second TKI. In April 2022, I was once again admitted to the hospital, this time with fluid around my heart, and I had a "pericardial window." After seven days, they drained 550 cc of blood and fluid from my heart. I was then put on the chemotherapy medication Tasigna®, my third TKI. However, in September 2022, I was once again hospitalized, this time with rhabdomyolysis, as I was barely able to walk. Then in October 2022, I fell because of the rhabdomyolysis, and I fractured my left shoulder, the humerus bone, and I was once again hospitalized for the fourth time. I spent four months in physical and occupational therapy to learn to walk once again. I was then put back on the Gleevec® but at a low dose of 100 mg. However, the results were as severe as when I had been put on the medication in March 2021.
In June 2023, I was sent to the Mayo Clinic in Rochester, Minnesota, for a second opinion, and my BCR/ABL1 was now up to 13.2%. In July 2023, I went to the Avera Cancer Institute in Sioux Falls, South Dakota for a third opinion. In both cases, the doctors recommended that I be put on bosutinib at a low dose of 100 mg. The doctors told me, "Unfortunately, no great options exist outside of bosutinib." I started to take the low dose of bosutinib on July 27, 2023. This is now the fourth TKI that I have been on. Unfortunately, this is my "last rodeo!" I am now doing weekly lab/bloodwork to very closely monitor both the effectiveness of the bosutinib and to see if any more severe side effects begin to develop from the bosutinib.
As of today, Wednesday, August 2, 2023, I have been on bosutinib 100 mg for seven days, and I am doing fine. I just hope and pray that this TKI will not only be effective but also not create any serious side effects. I also have comorbidities including type 2 diabetes and stage 3 kidney failure, in addition to coronary artery disease. The only good news is that my blood counts still remain normal.
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