2022 Big Climb Honoree
In early October 2016 Jeff Sullivan and his wife were at the airport about to board a plane when he felt a sensation in my neck. I felt the spot where the sensation came from and there was a lump. Concerning for sure but figured I would watch it and hopefully it would go away.
After a couple of months of monitoring it hadn’t gone away. I saw my primary care doctor who referred me for an ultrasound done on Monday, November 28, 2016. That day I immediately knew something was wrong because the radiologist came in and started repeating some of the ultrasound procedure that the technician had done. And as I suspected it wasn’t good, multiple lymph nodes were extremely enlarged, and he wanted to do a needle biopsy immediately. The fluid was taken and sent to the lab, and I was sent home to wait, and pray it was nothing serious. It took 2 very long and excruciating days for someone to finally get back to me with the results, and on November 30, 2016, I was told I had leukemia. It was shocking, devasting and fear inducing.
The diagnosis led to quick referrals to oncologist. At this point I was told for the first-time what kind of leukemia I had, Chronic Lymphocytic Leukemia, CLL. The good news was it was the ‘good kind’ of cancer/leukemia, slow growing and responds to traditional treatments if you need them. With my relatively young age (51 at the time) and general good health I was repeatedly told I would die of something else long before the CLL got me. Up to this point my wife and I had kept the diagnosis to ourselves. We wanted to know more and talk to the oncologist before telling our children or families. Armed with the specific disease and the good prognosis we embarked on telling our 3 kids. Telling our kids I had a potentially terminal disease, even if the ‘good kind’, was gut wrenching. Watching them take it in, process it, each responding to the news differently was one of the hardest things I have had to do.
A few short weeks later though things changed. FISH testing and other diagnostic tests were run and turns out I didn’t have the good kind. When it came to negative prognostic indicators, you name it I had it. 17p Deletion, TP53 mutation, IGVH Unmutated, etc. Treatment was no longer ‘if’ but ‘when’ and traditional chemotherapy for CLL was not an option with these negative factors. At this point, I was referred to Dr. John Pagel at the Swedish Cancer Center. Dr. Pagel is one of the foremost experts on blood cancers, having him here local, and me being lucky enough to get a referral to him, was a blessing. After some initial meetings and a few months of ‘watch and worry’ it was clear the disease was progressing at a rate that treatment was required. Dr. Pagel, my wife and I decided on a drug trial as the best course forward. It involved two relative new drugs at the time, Ibrutinib and Venetoclax.
I started my treatment in May 2017 taking the Ibrutinib first. I would take that for 5 months then introduce the Venetoclax. Initially it couldn’t have gone any better. The anticipated side effects both minor and severe never materialized. I went in for a check-in on Tuesday, September 19th and my blood work was nearly back to normal across almost every measure. Then on Monday, September 25th things went horribly wrong. I was in my office at work, meeting with a colleague and the next thing I know I am out in the hallway, shirt off, paramedic over me, him saying, ‘He’s back, let’s go’. My heart’s electrical system had gone crazy, and I had a cardiac arrest.
During the rest of the day at the hospital I had felt fine, but even after a battery of tests and procedures doctors remained unsure of the cause of the cardiac arrest. That night, my wife and I were trying to sleep in the hospital room when the nurses rushed into the room and threw on the lights. My heart’s electrical system was once again out of control, and I had another cardiac arrest. I had several more, each time CPR, defibrillator shocks to the heart and back to consciousness until 5-20 minutes later the next one would come. I was eventually put under and incubated and transferred to another hospital so a surgical procedure could be performed in hopes of stopping the arrests, but I had 2 more on the operating table. Finally, as a last resort a pacemaker was implanted, and its electrical pulses were able to stabilize my hearts activity. During that initial 30-hour period it is estimated I had 15-20 cardiac arrests and my heart was shocked potentially as many as 80 times or more. I was in the hospital for a week and by the end of the week all the doctors were convinced the Ibrutinib had caused the issues.
Obviously with the trauma I had been through and the drug being the cause I ceased treatment at that time. I went back to watch and worry getting my blood checked every 3 months to see how the disease had progressed. Inexplicably for nearly 18 months the disease did not progress. Then in early 2020, two things happened, the CLL began to progress again and COVID. COVID has been brutal on all of us, but it creates some unique challenges for someone with a cancer that messes with their immune system. What data there is paints a very dire picture for CLL patients should they develop a serious case. The vaccines, a god send for sure, likely provide limited, and in some cases no, protection for those with CLL. Additionally, CLL treatments only exacerbate the immunity issues, but my CLL was advancing so despite the increased risk from COVID I began my second treatment in March 2021. Part of the treatment involves taking 4 pills daily, the pills come in a bag that is marked with a biohazard symbol. It is sort of an exercise in cognitive dissonance to take them each day, but the great news is the treatment has gone as planned, no heart issues this time and my latest bloodwork in August was ‘perfect’. At this point treatment will continue for at least another 6 months but could go on indefinitely. With the results to date we are all very hopeful I am on my way towards a long and deep remission.
2022 Big Climb Honoree
The day that my son Theo was diagnosed with leukemia, I experienced pure devastation and loss that I did not know existed. Growing up poor in some of the most dangerous and ravaged neighborhoods that one can imagine, I've always conducted myself knowing that I would be prepared for anything life could throw at me. The thought of my son, the carrier of the family last name for generations to come, having cancer, caused a ripple effect of complete sadness and confusion to our families and friends.
What happens next? Is he going to get through this? Are WE going to get through this? Overwhelming, scary, a state of total desperation.
Fortunately, Theo is being treated by some of the most humane, magnificent, and knowledgeable doctors, nurses, and staff, in the world for treating leukemia.
We are extremely fortunate to be surrounded, loved, and supported by a loving community of family, friends, co-workers, and strangers that came to our aid when we needed it the most.
The first year of treatment was extremely difficult, a long arduous journey. Nothing about Theo's cancer treatment has been easy. Theo, however, is a warrior. Even during the hardest and sickest days he has been brave and strong, remaining always positive and in the process teaching us to be strong. He is a reminder to us of all that is beautiful in this world.
To learn so much through pain during this process and to be eager to share his story is his gift to the world.
2022 Big Climb Honoree
The beginning of Megan Coffland’s story begins when her older sister was diagnosed with Leukemia when Megan was 8. I remember flying cross country with my parents and feeling like I needed to be strong for everyone. I knew my sister was exceptionally ill, and that everyone thought her survival was a miracle, but I was not aware of just how close we came to losing her until I was older.
3 years later, I received my own diagnosis with Hodgkin's Lymphoma. My mom and sister told me together, on a beautiful sunny afternoon. These years later, I can't fathom the strength it took for my sister to step up as a survivor and be a part of that conversation. I grew up in Alaska, so we needed to immediately fly down to Seattle to get a full diagnosis with staging and for me to start treatment. I stayed at Ronald McDonald house and was surrounded by kids so much sicker than I was, it really helped put my illness into perspective. Stage 3 Hodgkin's had been a death sentence just a handful of years before, and all I needed was 6 months of chemo. At that point, they were just starting to back off radiation for everyone at Stage 3, and we ended up opting out. It was empowering to have a team at Children’s that was willing to give us the data they had and weigh the risks vs. benefits ourselves. Prednisone face and bald is not how any preteen girl wants to go into 7th grade, but mostly I remember being very angry that I wasn’t allowed to miss school for my chemo appointments and was forced to miss volleyball practice instead. I have been in remission since 1996.
My mother was diagnosed with undifferentiated carcinoma of unknown origin just a few short years later. They tried several treatments and ultimately bought her two more years, enough time for her to watch me walk at my high school graduation, but ultimately, she didn’t survive. My amazing sister Jenny aggressively battled a second cancer, this time breast cancer, and is joining me as an Honoree this year. I have seen the full spectrum of outcomes and watched the tremendous advancements in diagnostics and treatments over the last 30 years. I’m so grateful for the research done, and the hope it gives me that now my own fairly mild treatment story is increasingly the norm.
2021 Big Climb Honoree
Arihanna “Ari” was diagnosed on December 30th, 2019. At the beginning of December, I began noticing that she was looking pale, but it would come and go, she wasn’t eating her lunch at school, she also had so many bruises on her legs and a really strange one that on her abdomen, but I didn’t think much of it, she was in gymnastics and was an active child. On December 29th, she had a huge nosebleed that wouldn’t stop, she had been prone to them since she was a baby, so although it was alarming it wasn’t out of the norm. She had just competed the most laps around her school for a walk-a-thon, gone ice skating and rolling skating. This girl never complained about anything, however she was falling asleep in the car. So on December 30th we made an appointment with her pediatrician, I told them that I though she was anemic. The nurse comes and pricks her finger to see her level of red blood cells and I will never forget that face, she didn’t have to say anything I knew my child had cancer. The doctor came in and sent us to Children’s Hospital to get blood work and then go home, that she would call us to see if Ari needed a blood transfusion. When we got home I had Ari eat some steak but her energy was low at this point. About 20 minutes after we got home the pediatrician called and said we had to go to the ER immediately I asked, “does she have cancer?”, she responded “it seems so”. I remember wanting to laugh because the thought of my child having cancer was ridiculous; this doesn’t happen to us.
Once we got to the ER the oncologist told us “your life has just changed” she was diagnosed with High Risk B Cell Acute Lymphoblastic Leukemia. Everything in the ER is a blur - the x-rays, ultrasounds, doctors, nurses in and out - We were moved to the oncology floor, they couldn’t start treatment right away because it was the 31st and there were no doctors available to insert her port but finally on the 1st someone was there and she began getting her treatment on the first day of 2020. Every day they would check her blood to see how her “blasts” were and on the 8th day she was clear (a good sign that treatment was working), we were discharged on the 9th and by the end of the month we got the good news that she was in remission.
Ari has had minimal side effects except for a very scary episode of pancreatitis. She did lose her appetite and had to have an NG tube that honestly was a lifesaver since it took away the pressure of eating and taking her medication. This picture that we are sharing with all of you is the day she reached maintenance and she took the tube out herself. It shows how strong and beautiful she is. Her hair is starting to grow back and she has adapted to taking oral chemo at home, COVID tests basically every month, lumbar puncture medication (she hates being put under anesthesia) almost every month, and she takes it with such normalcy that I wonder if I could do it with such grace as she does. She is for sure my hero.
Through her treatment she has developed connections with other children who are also undergoing cancer treatment and she is so carrying and understanding, this experience has matured her so much.
We climb because no child should have to go through this, we climb for new treatments, we climb to support everyone who have joined the blood cancer club.
2020 Big Climb Honoree
My son Gracin was diagnosed with B-Cell Acute Lymphoblastic Leukemia on March 6th, 2018 at the age of 8. The path that lead us to his diagnosis was not an easy one. Shortly after Gracin’s 5th birthday we started noticing an inflamed lymph node on the right side of his neck. It would swell up occasionally here and there but eventually it was inflamed more often than not. When I say inflamed, I mean it would protrude from his neck, visibly about the size of a golf ball. We addressed it with his pediatrician multiple times but the answer we always received was that he was just battling a virus. By the time Gracin was 6, this golf ball sized lymph node never left his neck. His pediatrician told us it was nothing to be worried about and assured us it was simply a deadened lymph node.
Fast forward to when Gracin was 7 and entering 3rd grade, not only did he have this mass on the side of his neck but he started complaining of leg pain. I knew something was wrong because as the months passed the leg pain went from just an irritation to the pain becoming completely debilitating for Gracin. He would scream and cry and become inconsolable. In December 2017, Gracin woke me up in the middle of the night sobbing quietly to tell me that he was not going to live through the night. He told me that he was in so much pain that he was sure he was dying. I rushed him to the ER and after running tests they released us with the diagnosis of growing pains, which is what his pediatrician had told us as well. Gracin had a few more leg pain episodes up until diagnosis that we simply, now shamefully, ignored. I thought he was consistently attempting to get out of school because after all every professional told us he was fine and healthy...
Thursday March 4th, 2018 Gracin woke up not wanting to go to school saying he was tired. I of course sent him to school and assured him he could go to bed early that night. Around lunch time I received a call from Gracin’s attendance lady. She wanted to personally tell me that Gracin was napping in the nurses office and she thought something was wrong with him. His teacher said he was almost lethargic and unable to stay awake in class. I took him home and allowed him to sleep. He claimed he was just tired. Gracin slept for almost 24 hours straight so by Friday I had made an appointment with his pediatrician and told her that I wanted extensive blood work done and we needed answers. On Friday afternoon, not even 45 minutes after we left, after Gracin’s blood work was taken I got a phone call that shook me to my core. Gracin’s pediatrician was clearly shaken up and told me that his blood work was not right and that I needed to take Gracin to Seattle Children’s hospital immediately. She said she couldn’t give me any answers but she believed there was some “foreign process” going on in his body.
Upon arriving at Children’s, we were met with the ER doctors as well as the oncology team. After conducting their own labs, they let us know they would be admitting us to the oncology floor for further testing. We were reassured that it was only precautionary and that they were 99% sure it was not cancer related. Over the next couple days we met with every specialist possible, multiple times. Rheumatology, infectious disease, you name it. Questions after questions, tests until eventually on Sunday it was handed back to oncology. Monday March 5th they performed a bone marrow aspirate on Gracin. Again we were told they were still 99% positive it wasn’t cancer and this was simply being done to rule it out. As much I knew in my gut it was cancer, after reading up on all his symptoms that weekend in the hospital, I still wasn’t prepared to hear the words “Gracin has cancer”.
March 6th, 2018 in a room with an oncologist, a resident (two strangers) and Gracin’s step mom, I found out my 8 year old son had cancer, Leukemia. To make matters worse, his step mom and I chose to stop the oncologist after hearing those words as we didn’t want anymore details until Gracin’s father was present as well as my husband, Gracins step father. As a result, we had to hear it again but this time knowing what was going to be shared as new news to the other half of Gracin’s parents. After a tormenting 5 days in the hospital, years of symptoms, we finally had our answer and it was all of our worst fear.
Gracin was hospitalized for the next 10 days as they started treatment. I assumed that we would have time to process, look at treatment options, hospital/oncologist options but I realized quickly that was not the case. His cancer is acute and was moving quickly so we needed to act fast. The next day he started treatment. This 8 year old boy who screamed at the site of needles and could barely take down cough syrup was getting poked multiple times a day, given an abundance of different medications orally and intravenously. In a week he was on multiple chemo’s, many other medications to combat the side effects of the chemo and had undergone three procedures. Gracin didn’t even bat an eye. Instead he focused on the positive things, like the perks of having a 5 page menu to choose from for every meal. As well as being able to have unlimited amounts of Gatorade and ice cream cups because they all counted towards his liquid intake. He said he was scared when I asked him but never once did he show any fear. He was simply brave and present.
Thankfully after the first 5 weeks of treatment, Gracins cancer was put into remission. Gracins treatment is 3-1/2 years long and right now we are 18 months in. He is currently in the long term maintenance phase of treatment which requires him to take daily and weekly chemo’s at home, have monthly check ups/labs and every three months he has lumbar punctures with intrathecal chemotherapy. This will be the routine for the duration of Gracin’s treatment.
Since diagnosis Gracin has been through so much. Monthly lumbar punctures, MRI’s, hospitalizations, hair loss, terrible sickness, 2 port procedures, steroids, NG tube placements and use, weight loss, significant weight gain, missing half his 3rd grade school year, missing an entire summer, unending amount of port accesses, ER visits, spinal headaches, physical therapy, counseling, insomnia, lethargy, bacterial spinal meningitis, petechiae, red blood cell transfusions, platelet transfusion, chemo increase, chemo holds due to low counts, anaphylactic shock from chemo and a ton of different side effects from all the medications and chemos he’s been on.
As a result of steroids and one of Gracins chemo’s, Vincristine, he has neuropathy and the beginning stages of bone death in one of his legs. Gracin has always been a very active, sports kid so this has been the hardest blow for Gracin as it has affected the way he walks (joints/ankles) and runs (speed). Regardless, Gracin has been determined to not allow anything hold him back. This spring he played baseball and this fall he started flag football. He pushes himself constantly when it comes to sports or academics and fights to not have any modifications made on his behalf because of his cancer. Gracin has always been a competitive kid and he has faced this battle with cancer just like any other competition. Fearless, relentless, goal minded, passionate but still is able to maintain his softer compassionate side and not get down on himself during the low points. To say the least, our life has forever changed. This is a family and a community we wouldn’t have ever asked to be apart of. With that said, I’m so grateful for everyone who is in it with us. Like other brave cancer impacted families who also don’t have a choice but also those who by choice, CHOOSE to be in it with us. This includes organizations like LLS and the individuals who help make the LLS possible by helping to raise funds and awareness. There isn’t nearly enough government funding for cancer research, blood cancer research/trials and specifically pediatric cancer. This is why it is so important to support and bring awareness to organizations that raise private funds for cancer research. Until we have a cure, there needs to be better treatments with less long term and short term side-effects and the only way to discover new treatments and eventually a cure, is through raising awareness and providing funding to research facilities.
This is why The Big Climb specifically is special to our family. The popularity of it has brought so much awareness thus funding to our corner of the world. A small team of my family climbed last year for the first time in honor of Gracin. Gracin came to support us and cheer us on. When he walked in and saw the multitude of the teams and people preparing to climb, jumping up and down in excitement all to support something that directly has affected him, he was in awe. He immediately told me that he wanted to climb the next year. When you are in the hospital room for days on end, you can’t help but feel alone in this battle but then we go to an event like this and we realize that there are so many people in Gracins corner. Last year at The Big Climb, Gracin saw the support and felt it and this year he is looking forward to joining everyone on the climb, whether he makes it all the way to the top or not, his goal is to try his hardest.
2020 Big Climb Honoree
The first day we knew something was wrong, was July 4, 2007. Charlie was in such pain, that all he could do was cry. We didn’t know exactly what was wrong, only that something hurt. There were no other symptoms, and luckily the pain subsided. A few weeks later, we realized that his stomach had swollen and his low grade fever still persisted. Upon further tests in Bellingham, we found that his liver had swollen well below his belt line, as well as swelling in his lymph nodes. At this point, his pediatrician sent us to Seattle Children’s Hospital to the emergency room. We were told they would be waiting for us, and pack your bags for a few days. Charlie may have cancer. At that point, we did not know what to expect. Our vibrant 5 year old was sick, but it could not be cancer. How could that be possible? The tests were done, and the results were back. Charlie was diagnosed with Acute Lymphoblastic Leukemia. Our world stopped. Normal daily activities jolted from their course.
What we thought would be a few days stay at Children’s became a 6 week start to a long treatment journey, which included pneumonia, kidney failure and a stay in the ICU. The next time that Charlie returned home was the end of August. We were able to return to school for a short time as a preschooler, before having to return to the hospital in December for another round of heavy chemo treatment, and Christmas away from home. When Charlie was first able to return to school he had no hair, his face swollen from steroids and had feet issues from the result of chemo medicine, and sometimes had to be wheeled to recess in a kid’s stroller.
The treatment protocol for Charlie’s cancer lasted 3 years and 2 months. Charlie encountered large needles, spinal taps, blood transfusions, infection scares, medicine that you can’t pronounce, and many nights in the hospital. Charlie faced this with great courage and patience, with the motto, “Never give up!!!”. During the last 2 years, the impact of the chemo medicine was much less, though we still travelled once a month to Seattle Children’s Hospital for his check up and monthly chemo infusions. His parents were nervous to let him do many contact sports or some other activities during treatments, due to his port-a-cath as the risks were high if he injured his chest in any way. Charlie’s journey ended successfully. He is athletic, runs cross country and track, he is funny, and knows more movie quotes than should be humanly allowed. He is cancer free, but the journey left us changed. There is a realization of what it is like to be sick, really sick. Also a feeling of how blessed we were. We saw many other sick children during that time and since, some with a much less optimistic result facing them and their families. Many people that climb have been changed by cancer, either as a survivor or caregiver, or someone who has lost a family member, friend, or loved one to some form of this dreaded disease.
Charlie has chosen to fight back the best that he can. Team Charlie was formed in 2009, before he was old enough to climb! Charlie loves doing this event every single year.
2019 Big Climb Honoree
John Remington died on Saturday, April 21, 2018, just shy of his 82nd birthday. He battled CLL (Chronic Lymphocytic Leukemia) for 13 years. John was diagnosed with CLL in May of 2005. He was not symptomatic; a routine blood test showed an elevated WBC (white blood cell) count. He was referred to an oncologist that did more tests and advised that at some point he would need treatment. Doctors told him they hoped to give him 10-15 years. John got 13.
John was the most capable man that we have ever known. He was well-read and versed on a myriad of subjects. You could go to him with a question about literally anything and he would likely have an educated, and guaranteed lengthy, answer. I would give anything to be "stuck" listening to one of his lectures now. John is one of the best story tellers you could ever imagine. He worked hard and expected a lot of himself and others. He was an architect, a pilot, and served in the Air National Guard. If you wanted something done and done right, you wanted him to do it. That “something” might end up taking three times as long as would be expected, but it would be PERFECT. He worked out daily and set goals for himself ranging from marathons, weight training, hikes, and in the last years of his life he trained for The Leukemia & Lymphoma Society's Big Climb event. He completed the climb twice, and you can’t even begin to imagine how upset he was when he wasn’t able to do it a third time. Up until a few weeks before he passed he would constantly tell us that he needed to get back to training.
John relished the good things in life including art and music, travel and nature, food and wine, and friends and family. His work took him all over the world spanning the United States, London, Guam, Tokyo, Saudi Arabia, Philippines, Kuwait, and the UAE. While he didn't have a singular best-buddy, the number of people who he had as friends and whom called John friend was legion. He helped out a friend in need without hesitation, volunteered or lent his expertise in areas whenever possible. The experiences of his life gave him an understanding of the world few will ever know. He was unencumbered by the political correctness that stagnates the world and preferred to actually get things done. His keen wit, sense of humor and ease with words, was infectious. Wherever he was people were drawn to him, and the irony is, he really did not want any undue attention. He would be honored, but also somewhat horrified that we were talking about him right now.
After several years of treatments and medications he began to experience night sweats for the first time in his 13 years of cancer. His last three months of his life became very frustrating to him because he had extreme fatigue, weakness, foggy brain, difficulty with concentration and focus which kept him from doing the things he loved. Life changed as John and his wife knew it, they could no longer plan outings, trips, and activities and the fear mounted as John became unstable and had several falls. John needed a lot of help with the smallest things before he died but in his last months of his life he was surrounded daily by his biggest accomplishment — his family.
Cancer absolutely sucks, but you have to stand in the face of it, understand that grieving begins long before death comes, understand that the person is not the disease, learn to accept help, don’t hold back the things that need to be said - those left behind hang onto those words. Be thankful for what you have, know you are not alone even when it feels like you are, laugh even when it hurts, appreciate the little things, when your loved one is gone that is all you remember.
It is an amazing honor for John Remington, husband, dad, brother, and grandfather and friend to be selected as one of the Honoree’s for the LLS Big Climb
2019 Big Climb Honoree
Jack’s journey with ALL started with a complaint of pain. At 6 years old, he was getting fevers that turned into rashes, bruising that wouldn’t go away, and pain in his legs and knees. With his dad being so tall, we had assumed it was growth spurts. Between July and September 2017, these complaints turned from his legs hurting to his bones being in pain. Most visits to the local ER resulted in the ER suggesting that we go home and rest and to come back if his symptoms did not get better. At this point, I knew something bigger was wrong. I knew his symptoms would not get better. After many missed days of school, I took Jack to his pediatrician. They told us that Jack probably had hand, foot, and mouth disease which explained away the fever and rash, but not the leg pain. We were told go home and come back later if leg pain persisted, but I wouldn’t leave. I told the doctor I wanted answers and requested blood work.
It is an awful feeling being a parent, trying to advocate for your child and have the doctor’s respond to you as if you are crazy. A few hours after the blood draw, I received a phone call “you’re right something is going on in Jack’s body” I am going to run some more tests and will call you with the results. Hearing the doctor admit my worst fear of something being wrong with Jack was terrifying. For the next 48 hours every blood test checking for specific markers was abnormal.
Seattle Children’s requested we repeat bloodwork to check how his labs looked after the initial doctor visit. We went back to the pediatrician, his blood looked worse, and I asked the dreaded question “Is this Leukemia” (I had been doing research like crazy with blood test results and symptoms). His pediatrician said most likely it is, and if we were “lucky” we would get the “good kind”.
We immediately headed to Seattle Children’s where the Emergency Department was awaiting Jack’s arrival. On September 27, 2017, Jack was diagnosed with Pre-B Cell Acute Lymphoblastic Leukemia. We immediately started the 3 1/2 year treatment regimen and stayed inpatient for 6 days. Jack endured the toughest phases of treatment like a warrior. He showed no evidence of disease at the 30 day mark, which is great for his prognosis. Jack is currently in long term maintenance which consists of a cocktail of chemotherapies given to him orally, intravenously and directly into his spine. With God on our side, Jack’s end of treatment date will be November 30, 2020.
When you get told your child has cancer, it is nothing short of devastation, world shattering. You are so fearful of the outcome, but quickly learn that fear is a choice. We choose to not fear cancer and find joy in the simple things. We choose to fight for Jack and all our friends battling cancer.
We are climbing so other parents don’t have to fight to find out what is making their children sick. We climb to fund private research because the government only provides 4% of national funding to pediatric cancer research. We climb because 3 1/2 years to treat the most commonly diagnosed pediatric cancer with archaic chemotherapies, IS NOT OK! We climb to raise awareness, increase funding, and make noise loud enough that everyone wants to be involved so that one day there is a world without blood cancer.
Team captain of the Big Climb team To the Top, Andrew Taylor, had recently become a father for the first time back in 2007. When his child was only two weeks old, a house fire burned through his home. While his family remained safe, there was some structural and smoke damage from the fire that needed repair.
Taylor took it upon himself to lay down some layers of shellac to conceal some of the damage. Almost exactly six months later, Taylor noticed an unusual mass in his abdomen, and doctors soon diagnosed him with non-Hodgkin’s lymphoma. He was told the tumor appeared to have been growing for approximately six months almost exactly since the time he had unintentionally inhaled some chemical fumes from making the repairs on his home.
After this, his family relocated to a different home to start over and he began treatment with rounds of chemotherapy. He underwent six rounds of chemo, which his body reacted well to, although he did lose his hair during the process.
Unfortunately, but not necessarily uncommonly, his lymphoma came back two and a half years later. Taylor once again self-identified that he had at tumor growing, but this time it was found near his throat. By this time his cancer had reached stage 4, and he underwent a stem cell transplant using his own stem cells. This time around the treatment was undeniably tough on Taylor, and meant he had to take time off work from his job at Microfocus.
The stem cell transplant produced only temporary results before just one more year passed and the cancer made its comeback again. Doctors told Taylor he’d need a second stem cell transplant but that it had to come from someone else’s cells, and it needed to be a very specific match.
This type of transplant is inherently risky. Because foreign cells are being placed in a patient’s already susceptible body, the risk of rejection is high if proper procedures and precautions are not taken very seriously.
Because Taylor has an “odd marker” in his genes, he was unable to find a person who was a match in the donor pool to do the transplant. His sister offered to be the donor, and Taylor eventually accepted when no other alternatives could be found.
Getting to the point to be ready for the transplant is a strenuous road. He had to endure more chemo, full-body radiation, and take even more time off of work. He experienced some rough side effects that caused loss of most of his ability to taste, significant weight loss, and at one point he became so thin he had to be put on a feeding tube. His fingers would go numb, extreme cramping at night caused lack of sleep, and there was of course the persistent nausea that seemed like it would never go away.
But all in all, the transplant was a success and Taylor has now passed his 5-year remission mark in May of 2017.
“This procedure was fairly new and risky even 20 years ago, so there have been a lot of advances over the last 10-15 years and a lot of that is due to funding from LLS,” Taylor said. “If this hadn’t work I probably wouldn’t be here. But it did, and my sister is my hero.”
He says many people have asked him what he’s going to do to celebrate his 5-year mark. To this he has to say, take care of his responsibilities. While the cost of treatment didn’t absolutely break the bank for Taylor, and as much as he wishes he could take off and travel, taking a break from his regular life post-cancer is no simple task.
“In reality I don’t have the money to go to Hawaii or on some big trip,” Taylor said. “I have my two kids to take care of, and it’s expensive and time consuming and not everyone has the ability to change up their life. If anything, they would have more bills to keep up with. I probably spent $10K every time I got sick on just copays and the basics,” Taylor said.
It’s obvious that most of Taylor’s focus surrounds being a dedicated father. When he talks about taking his two children on trips to camp in the woods, or plans to visit Banff National Park in Alberta his eyes light up. He says that every year he’s thinking about how he can help create memories and make a great trip for his kids. If remission means anything, it must mean the ability to spend more time with those who matter most.
He is confident that his cancer won’t return, and that he is in the clear for the long haul. He no longer goes in for regular checkups, and brings up the point that in all honesty it’s a serious financial burden. On average, one appointment with scans might cost $1,000 and require taking a vacation day “to get poked, prodded, and told that he’s ok.”
“Everything SCCA has done for me is amazing,” Taylor says. “But I want to leave this behind me. I don’t have fear anymore and I’m done.”
He knows that he would be wasting his time worrying about the ‘what if’s’, and is an advocate of living a balanced life and a committed parent. For him it’s all about living life cancer-free in every sense of the phrase, and doing what he can to give back to the community that supported him throughout his battle.
In fact, last year’s Big Climb was the first event where both his children joined him in the stairwell. They each had their own fundraising pages, and wrote their own reasons for why they were climbing and fundraising for a cure. For Taylor it’s important to educate his children and be transparent about his experiences and how they can do their own part in helping find a cure for blood cancers.
Education about the world of blood cancer is important to Taylor. He even has participated in a couple video projects put on by the National Health Institute about his personal treatment experience, and how he navigated his experience.
He’s satisfied knowing that he can contribute to what those going through a new cancer diagnosis can learn to expect, and hear from varying perspectives. Being your own advocate is also a major piece of how Taylor handled his run with cancer.
At first, his oncologist wasn’t a great fit for what Taylor needed. He was looking for hard facts and realistic, in-depth information that he felt he wasn’t getting. After switching to a different oncologist, Taylor felt it was a better match and that the two would find better success.
“Learning how to step up and advocate for myself really turned into a good thing,” Taylor said. “In general I don’t really have much advice to give about this because I think that people should simply do what is right for them.”
Colin Craig is an infectiously positive person. Whether it be his jolly voice, shock of curly white hair, or the literal bounce in his step, he is sure to put a smile on the face of anyone he crosses paths with. One might think that his life has always been smooth sailing, but that is not the case.
Soon after he took up road biking in 2009, his passion for cycling took off. In 2010 he was inspired to join the Leukemia & Lymphoma Society's Team in Training program to complete "America's Most Beautiful Bike Ride", a century (100-mile) bike ride around Lake Tahoe. It was only three years later in an ironic twist that he was stricken with a blood cancer, the very disease he had been fundraising and cycling to rally against.
At the age of 64 Craig was diagnosed with stage 3 follicular lymphoma, a form of non-Hodgkin's lymphoma in February of 2013.
Luckily, Craig's symptoms weren't too severe. They began as occasional abdominal pain and exhaustion that seemed to be unfounded. Because of this, in January 2013 he made a visit to the doctor who confirmed he had an extremely enlarged spleen and a blood count that deviated from the norm. After being referred to a secondary doctor for a PET scan, Craig walked into the office and discovered it was a cancer care unit he was visiting, and had his first rude awakening of what his symptoms could mean. The PET scan revealed nodes all over his body and a cancer diagnosis was confirmed. Soon after he was placed in a phase 3 clinical trial for his specific type of lymphoma.
Craig was fortunate enough to be randomly selected to receive the trail arm of the clinical trial, meaning he was set to receive the full regimen of drugs. It was decided that he would take on a two drug trial combination instead of R-CHOP chemotherapy, an acronym for five different drugs given in phases three weeks at a time, up to eight cycles, and typically over the span of 3-4 months. Side effects for Craig were very minimal and he is well aware that this is definitely not always the norm.
"If I didn't tell people I was being treated for cancer, they probably would've never known," Craig said. "Because I had a targeted therapy drug that wasn't 'systemic', it targeted certain proteins on lymphocytes so that in turn, it lets my immune system recognize what it was supposed to, and didn't harshly affect other parts of my body."
He admits that whenever he speaks with other patients who have gone through intensely trying and painful treatments, side effects, and recoveries, he feels guilty. He was lucky enough to be one of the few that tolerated his chemotherapy very well, and hopes that through advancements in less toxic treatments and cures, someday this will be the case for all those who are diagnosed.
Currently, Craig goes in every six months for blood tests and an annual CAT scan and is set to be monitored in this capacity for a total of 10 years to fulfill his participation in the trial.
As a career dentist for the past 43 years, Craig understands the medical world and therefore he enjoyed the opportunity to take part in a clinical trial. He knows how fortunate he is to be in a position where he is held accountable for regular check-ups so that if something ever were to come back, doctors would theoretically be able to catch it very early on.
"I never felt like I was going to be defeated by [my cancer]," Craig said. "It was just going to be a hiccup in my life and that it would be ok. My dad died of lung cancer and my sister died of pancreatic cancer, so it's not like [my family] has been immune to it in our lives, but my mindset was like 'this isn't how things are going to end, so let's just get on with it and get it done.'"
His cheerful perspective and intention to handle his illness as more of a manageable affliction rather than a potentially deadly disease has helped him to push past the negativity. His wife even tells him he's now more of an extrovert who is always eager to engage with people and hear about their lives. For Craig, learning to better take advantage of his days and the connections he makes with others is a pleasant byproduct of his diagnosis. He makes a point to never dwell on tomorrow, and always make good use of today.
Craig keeps fundraising because he knows funding research and patient services is the only thing that will help current and future patients so that they hopefully can also have a smooth outcome like his.
But that's not to say his experience was always simple. It came with challenges and emotional hurdles indeed. His wife, Leah, and two sons were instrumental in supporting Craig through his experience, and he says the staff of his dental practice were a wonderful support system too.
Back in 2013, members of his dental staff decided to volunteer at Big Climb in his honor, and in 2014 Craig's Legs was born. Since then his team has raised an impressive $275,000 with the help of friends, family (including most of his grandkids), staff and patients. The first year Craig was able to climb he was selected as an official event honoree and has become a big advocate of the work done by the Leukemia & Lymphoma Society and wants to continue recruiting people to join.
"I'm always introducing our team to new people who are going through their own cancer struggles," Craig said. "We have this one elderly mom who was diagnosed and LLS helped buy her medicines this year after her pharmacist told her about the service. Nobody knew LLS did that so we put that in our [team fundraising] newsletter to encourage people to contact LLS if they need patient assistance."
Participating in an annual event that encourage camaraderie, giving back to the community, and produces "awe inspiring energy" will hopefully keep Craig a Big Climber for life.
When Curran Parker, the namesake of team Climbing for Curry, was diagnosed with Hodgkin's lymphoma at the age of 20, doctors told him his first treatment had a 90% chance of successfully eliminating his cancer. As it turned out, Parker ended up in that remaining 10% with his cancer returning only three months later in a mass four times the size as before.
Parker's young-adult world and "immortal" sense of self was undoubtedly shaken. But this wasn't his first or last medical scare, as he had been previously diagnosed with focal nodular hyperplasia, meaning reoccurring benign tumors were prone to pop up in his liver over the years. Because of this complication, Parker essentially spent a year in and out of the hospital receiving chemotherapy and radiation, and carefully monitoring if masses on his scans were a result of something more sinister. Despite the tumors' typically harmless nature, every time one would appear it would impart a sense of fear that his lymphoma had made a comeback.
Parker says one of the masses was found in his chest and gave his oncologist cause for concern. But he finds great satisfaction in that on his doctor's very last day as a practicing oncologist, they were lucky enough to find the mass had mysteriously regressed and disappeared entirely on its own. As Parker puts it, he was free.
Now 27 years old and past his 6 year remission mark, he is officially considered in the clear. At this point he is adamant he's in remission for the long haul and fully intends to live his life accordingly.
"Throughout my entire time in remission I felt like something was telling me that it was going to be ok," Parker said. "[I knew] there would be trials and challenges but once I was cured, I was cured."
Since then he has finished his degree in Business Administration from Northwest University and even got married in September 2016. He sees a life spent fixating on something he believes will never come back is senseless and therefore he fully intends to live his days without fear. It's obvious the nurturing care and support he received while going through treatment has left Parker with an attitude that is hard to break.
"I think its taken my perspective to go from worrying about everything to just knowing that ultimately we don’t have the control that we think we do," Parker said. "Pertaining to family, it's given me a stronger backbone to have gone through something like this. To love people better, love my wife better, and care for people in a way that I don’t think would’ve been possible if I hadn’t been cared for during that time."
His inspiration to keep raising funds to find a cure for blood cancers doesn't just come from his own experience. During the 2016 Big Climb, Parker was introduced to a little girl named Olivia who was battling her own form of blood cancer, and was there to support his team. She was sporting a shirt that read "Olivia & Curry", and Parker admits that although he isn't easily shaken, spending time with Olivia that day absolutely melted his heart in a way he'll never forget. Thinking of a child like Olivia going through treatment and the pain of cancer when her life has barely started absolutely "wrecked" him.
"She's the reason why I climb," Parker said.
Whether it's a patient like Olivia, the immense financial burdens many patients have to overcome, or frustrations with his own experience fighting cancer as a young adult, Parker is passionate about raising funds to find a cure.
"I went through a year long battle with multiple failed treatments and was supposed to die," Parker said. "I went through that entire battle and came out the other side and still for the next 5 years had to face all these different scares and prognoses. Most people don't just get cancer and then they're healed and it's done, most people have to go through it multiple times. So imagine going through he worst hell possible, and having to pay bills for thousands and thousands of dollars just to live, then having to do it again. That's the world we live in right now and it's really, really sad."
Although he admits the physical side of the climb can be a nightmare, it's what the Big Climb represents and the funds it raises that keeps Parker coming back every year.
"It's an event where a lot of love happens in a very small space, or rather, in a very small stairwell," Parker said. "It's an opportunity for people who aren’t really that affected by health problems to pay it forward and to be a blessing on somebody’s life."
He hopes that over the years Climbing for Curry, which was started by one of his sisters in 2011 in his honor, will continue to grow exponentially in greatness. For a team that hit the $100,000 fundraising milestone in 2017 after only five years climbing, there's no doubt that they'll continue to achieve that goal.
For him, sharing his blood cancer story means giving back to the community. It's important to be a part of something bigger than himself, and if he can help one person along the way by sharing his experiences and lessons learned, that's really all he can ask for.
Puget Sound native, Dawnelle DeMarco, wears many hats. She is a 44-year-old mother of two, works multiple jobs including being in the middle of an, "illustrious taco career," is a powerhouse fundraiser for the Leukemia & Lymphoma Society and is a blood cancer survivor.
For the past eight years, DeMarco has been slinging kalua pork goodness on the Seattle food truck, Marination. She’s a self-described “taco angel” and has never loved a job more. This busy mother also finds time to work Marination catering events, pick up shifts at the Hawaiian/Asian fusion restaurant Super Six, has gigs with Guinness Beer, and still raises thousands of dollars for LLS's Big Climb Seattle every year.
One might think that with an already jam-packed schedule, being handed a cancer diagnosis on top of an already existing autoimmune disease might break a person's spirit. But DeMarco is undeniably tenacious, driven and ultimately optimistic. She's the kind of person that likes to have a party wherever she goes, and lives her life accordingly.
It was on March 25th, 2014, when DeMarco was diagnosed with stage 4 diffused large B-cell lymphoma. She had noticed that her face looked swollen in a photograph back in October 2013 and was in turn prescribed some steroids by her physician. After the swelling went down she noticed a lump appear in her neck which was eventually biopsied.
When she returned to the doctor expecting to hear that the lump simply needed to be removed, she felt her stomach drop as soon as the doctor opened his mouth. She could tell he was about to inform her that she had cancer.
Cancer wasn't the first disease DeMarco was diagnosed with. She suffers from Sjögren's Syndrome, an autoimmune disease that affects about 1% of the population. This disease essentially causes extreme dryness of exocrine (salivary) glands, most commonly affecting a person's mouth.
What DeMarco didn't know when she was diagnosed with Sjogren's Syndrome, was that it increases a person's risk for getting this specific type of lymphoma. It wasn't til later down the line that she discovered this inherent risk, and says it was no doubt unsettling that one disease she thought was manageable spurred on something more dangerous.
She was first told that due to lack of general symptoms, her cancer was likely stage 1 or 2. But after a PET scan that soon followed, DeMarco's doctor revealed the frightening truth that her cancer was "everywhere."
“It was found in my abdomen, pelvis, arm pits and lungs,” DeMarco said. “I started chemo a week later. It was the scariest moment finding out that I went from stage 1 to stage 4 and I really thought I was going to die.”
She then began treatment, and underwent six rounds of R-CHOP therapy.
For her first round DeMarco brought many of her friends along to the hospital. Before her dose was administered, the group broke out in dance to the song Happy by Pharrell Williams, not because she necessarily needed the encouragement, but because she didn’t want her friends and family to feel like she wouldn’t be able to handle it. She knew she could, but it's no doubt her support network helped.
“I felt people’s love from everywhere and I think that really saved me,” DeMarco said.
Like with many cancer patients' experiences, treatment doesn't always go perfectly smooth. At one point, she had an allergic reaction to the medicine Rituxan which left her in the hospital for six days due to a neutropenic fever.
On top of that, because of her autoimmune disease DeMarco's mouth got very infected which she says was intensely painful and left her unable to eat anything for five days.
When her hair began to fall out exactly two weeks after her first chemo treatment, she was alarmed by how painful of an experience that proved to be. No one had warned her that losing hair as a cancer patient would hurt, which only added insult to injury as she watched her long hair fall away. She soon shaved the rest of her hair off and was completely bald by her second round of chemo.
DeMarco says because she didn't often outwardly appear sick, many people asked her who she shaved her head in honor of. It was as if no one could believe she was in fact the cancer patient they were inquiring about.
Since then, DeMarco has made leaps and strides in her treatment and recovery, and recently passed her three year remission mark on July 25th, 2017.
“It feel amazing," DeMarco said. "Sometimes I think it’s hard to believe that I really had cancer. It seems like it was both yesterday and a million years ago.”
But just because this diagnosis seems like the distant past, she is hyperaware of how cancer is constantly burdening the lives of many others, including her dear friend and fellow Big Climber, Lynette Johnson.
The two met over 20 years ago when Johnson was photographing a wedding of DeMarco’s childhood friend. After hitting it off at the wedding, DeMarco knew she had to have Johnson photograph her own wedding a few years later, and ever since the two have become closer than they ever would have ever imagined.
“We both have two daughters, both had two miscarriages, and other weird, random things that have happened to us after growing and knowing each other for so many years,” DeMarco said. “We then became bald women at the same time.”
Both women are member of the Big Climb team, Team Soulumination, and members of the Elite 30, a group of the top 30 individual fundraisers from the previous year's event. Last year alone, DeMarco raised a stunning $7,445 for blood cancer research and patient access services, and says she's set her sights on hitting the $10K mark in coming years. With over 1,500 friends on Facebook, she is confident that if everyone donated just a little, she could surpass her goals.
"Every year I don’t want to ask people for money, but then I see Lynette and I know this is why we do it, and then I don’t feel bad because there has to be a change in how people in are treated," Lynette said. "Chemo doesn't work for everyone and its basically killing us anyways, there have to be better ways."
Whether you're an Elite 30 fundraiser or just climbing for the very first time, DeMarco knows that Big Climb is an opportunity like no other.
"This is one small way one can actually make a difference in the world," DeMarco said. "I truly believe that."
Back in 2008, Blaine, WA resident Larissa Dhanani received some bruises while playing a casual game of tennis. The bruises were largely shaped, strangely firm in the center, darker than average, and refused to fade away. As a typically healthy person she suspected her iron levels must've been low, so she made an appointment with her doctor in Bellingham.
It was shockingly revealed that her white blood count was off the charts, and she was quickly diagnosed with Chronic Myeloid Leukemia (CML) at the age of 55.
It wasn't her doctor or an empathetic nurse that delivered the news. She simply received a phone call, likely from a lab tech who processed her blood results. He began rattling off numbers and complex terms in a way that made Dhanani feel like whatever it was he was telling her she had, she was going to die from it. The very next day she was admitted into the hospital.
It was found that her CML was positive for the Philadelphia Chromosome. This meant due to translocation of part of chromosome 9 with chromosome 22, the latter is left abnormally short and causes a protein to signal for uncontrolled division of cancerous cells. This chromosomal defect is present in about 85% of CML patients. Luckily, doctors told her they had the “perfect” LLS-funded drug called Imatinib, (Gleevec) which she was put on right away. It only took three months for her white blood cell count to stabilize.
But this wasn't the end of her cancer journey. Dhanani eventually became resistant to Imatinib and had to be relocated over 100 miles south to be further treated at the Seattle Cancer Care Alliance where she stayed for over seven months.
In Seattle she was switched to another drug called dasatinib (Sprycel). As a common precautionary procedure in case she did not show success with this second chemo drug, her oncologist tissue matched Dhanani’s family members to see if any of them could be a match for a bone marrow transplant. Thankfully it turned out her brother, Doug, was indeed that person.
Dasatinib only worked until December 2010 for about 1.5 years until she received another blood test with concerning results. Her cancer had come back in early 2011 and was in what her doctor called "blast crisis." She had tested 95% for AML meaning her leukemia had come back as acute, with higher potential to spread more quickly and a higher risk for death.
"It felt as if my doctor was saying goodbye to me, and like he didn't know what there was to do," Dhanani said.
But despite this turn of events, there was a treatment plan put in place. She was placed on "bookend" chemo with a third drug, nilotinib (Tasigna). She received treatment, then given rest for a week, and then back on chemo in order to outsmart her quickly-adapting leukemia cells. In order to officially be accepted as viable bone marrow transplant candidate, her leukemia cell count had to be down to zero, which by no means is easy to achieve.
Dhanani says this three month period prepping for her transplant was the most difficult. The new form of chemo she endured was so toxic that any clothes she had been wearing needed to be washed before she was allowed to wear them again. Her hair began to fall out, she felt ill all of the time, had gastrointestinal distress, insomnia, intense heartburn, and such severe skin sensitivity that she couldn't even open the fridge door because the cold air was too much of a painful shock. To top it off, she even had to miss her youngest son’s senior year of high school while in the hospital.
Throughout this process she had to return to the hospital for regular lumbar punctures to insert chemo into her spinal fluid, and says she feels lucky that she didn't experience any complications with these procedures. When it came to radiation, Dhanani wasn't about to back down.
"Doctors told me I could get a certain amount divided over ten days, or could take the maximum amount instead, to which I said, ' I guess I'll go big!'" she said.
In order to kill off her immune system so her body would be able to tolerate a foreign transplant, she endured 14 rounds of radiation in one week. She stood alone in a room locked in by a massive metal door. There was a stool behind her, but doctors told Dhanani to only use it in case she thought she was going to faint. The Where's Waldo poster hung on the wall opposite the chair meant to keep patients distracted wasn't of any use to her, since without her glasses she couldn't see. She admits with a laugh that she wasn't very good at that game.
But her three sons, now aged 23, 26 and 30, would come every day to be with her during her radiation appointments, whom the nurses started affectionately referring to as her security guards. Her sons made her a "radiation CD" to listen to while under treatment so she wouldn't have to be alone with her thoughts.
Dhanani's middle son even decided to drop out of college for a quarter to move to Seattle, take a caregiver's course and be there for his mom when his dad had to be back in Bellingham running his business.
After radiation she was given a day to rest, and then it was time for the transplant. She was in the hospital for 20 straight days, and was only allowed to leave when she could show she was able to eat solid food, stand up on her own, and prove she had 24/7 care from friends or family.
Currently, Dhanani is in remission. However, while she has passed the 5 year remission mark, her doctors don't consider her cured. They tell her they simply don't know enough about if the Philadelphia chromosome is truly gone post-transplant, so they cannot definitively declare her cancer free. She's 6 years out now, and doctors say the further she gets the better chance she has at no relapse.
Although things are quite concrete, she keeps a positive attitude.
"I just try to be involved in my life," Dhanani said. "If I get a little too inside my head I make sure to get out and go do something."
Whether it’s taking Zumba classes like a fiend, or climbing 69 flights of stairs for Big Climb, Dhanani is staying active and motivated for her future.
It was back in 2011 when her youngest brother first heard of the Big Climb and decided to climb solo but under the name Larissa’s Crew. That year he individually raised an impressive $13,000 in her honor. Though she still can’t believe it, that following year she was able to participate on Larissa’s Crew and complete her first climb. In the span of just 6 years, her Crew has raised over $200,000 and Dhanani couldn’t be more motivated.
"The fundraising is what saved my life," she said.
For her it really is all about the research. "These [researchers] who love their job doing meticulous research, they're the reason I got to get to my 50th birthday, to see my kids get married, and see my grandkids," Dhanani said. "They told me if I had this diagnosis 10 years previously it probably would've been a death sentence. This research is everything.
Ruth Ramsey, team captain for Big Climb Seattle's Sassy Steppers, has been through more medical scares in her life than most. Yet, her attitude is unwavering.
It all began back in 2008 after Ramsey found herself experiencing headaches for six months straight. Her doctors found a brain tumor which they initially thought was brain cancer and told her she might only have six months to live.
After undergoing brain surgery to have the tumor removed, it was discovered that the tumor was actually benign. But in turn, Ramsey was diagnosed with a hereditary disease called Von Hippel-Lindau (VHL). VHL results in the occurrence of typically benign tumors in various parts of the body (often around the kidneys), although it is rare for growth of this sort to begin in the brain.
From there on out, Ramsey must go in for annual MRIs to monitor if any new tumors have arisen, and to catch any in case they have the potential to become malignant. During one of these scans in 2013, Ramsey's radiologist found cause for concern when they noticed an abnormality far from the kidneys, located in her abdomen. After a needle biopsy through her back, Ramsey received her second disease diagnosis. This time it was follicular lymphoma.
At the time she felt completely healthy. She had no problematic symptoms, so her health was monitored with regular blood draws conducted at the Seattle Cancer Care Alliance (SCCA). It wasn't until a year later in August of 2014 when Ramsey woke up to a lump on her neck that was getting bigger as each hour passed that had to begin treatment.
Upon returning to the SCCA, her method of chemotherapy was determined and was set to be relatively mild. After her first treatment, it only took about 15 minutes for her cancerous lump to become invisible in size. After this, she went in for infusions every Wednesday and Thursday, every four weeks, for six rounds. Then she was put on two years of maintenance therapy and is relieved to say that she recently finished her treatment in January 2017.
However, although she isn't currently on medication, doctors say that her cancer is 100% certain to come back. They say it'll likely lay in remission for around 2-3 years before she'll have to start up chemo once more.
"It just sucks and there isn't really another way to put it," Ramsey said. "But at the same time at the end of the day I'm thankful it was found the way it was, that my body reacted well to the treatments I got, that I didn’t' lose my hair, was able to keep my job, and I know that it could've been much, much worse."
It is indeed true that it hasn't all been negative over the past 10 years during this battle. In 2011, she got married to her husband, whom she says has been at her side for every single step of the way. They met in 2007, only one year before she had brain surgery and she jokes that at this point, he knows what's going on with her body far more than his own. He likes to (lovingly) say she should’ve come with a warranty.
Their family expanded in 2007 when they adopted a greyhound, who Ramsey soon got certified as a therapy dog after she spent time in the hospital for her brain surgery. For a while, Ramsey took her dog for volunteer trips at Camp Corey in Carnation, WA, to spend time with children who had a variety of medical issues, and expose them to the gentle love of a dog they might not otherwise get to meet.
"I felt like it was my little token of giving back to the world," Ramsey said.
Although they now have two greyhounds, having children is out of the cards for Ramsey and her husband. Because she has a 50/50 chance of passing on VHL to any offspring, the risk just runs too high. That, and her body is busy enough already battling a cancer that is sure to come back.
But that doesn't mean Ramsey is never around children, as she is a career math teacher who now works in the Issaquah School district. As a math teach at Skyline High School in Sammamish, WA, Ramsey has enjoyed teaching for the past 18 years, 10 of which she has spent at Skyline, and eight on Mercer Island where she grew up.
Whether she's teaching kids Algebra I equations or complex formulas in IB Math, Ramsey values making a difference in the lives of her students.
"My students don't have to love coming to class, they don’t even necessarily have to like it, but my goal is for them to not hate coming," Ramsey said. "I love it when a kid thinks they can't do something and then they discover that they actually can."
Her students and fellow faculty were incredibly understanding and supportive, and for that she is grateful.
"The average age of diagnosis for the type of cancer I have is 62," Ramsey said. "I was diagnosed at the age of 37 so if I follow the trend of reoccurrence then I'm going to end up getting more chemo than other people. I know I could lose this battle, but I'm thankful that I can go to work on Monday even if I'm not at my best, because at least I'm still there."
Ramsey, now 41 years old, is a straight shooter to the core. When she was first diagnosed it was common for people to ask her how she could be so positive about her situation. She simply explains that there wasn’t much else to do than deal with her situation day by day, and not waste her time or energy being upset about something she couldn't control.
"Life doesn't stop because you have cancer," Ramsey said. "It just keeps happening. And I've learned that I'm stronger than I ever thought I was, and that I can handle a lot of terrible things that get thrown my way. But I've made it here, I've done all that, so I can take on the world. Bring it on.”
Currently, she goes in every three months for a check-up appointment with a blood draw, and still feels grateful that if it hadn't been for her VHL, she would've never been getting those preventative scans in the first place that ended up identifying her cancer early on. And this grateful and humble nature is the attitude that Ramsey seems to take with everything in her life.
"It could be so much worse, and it's just too much effort to let things get to me, so why bother?" Ramsey says with a laugh. "Tomorrow will come regardless of how I feel, it'll still take the same amount of time so I'll do what's necessary and that's it."
There is one exception for Ramsey looking toward the future, and that comes with finding a cure for blood cancers.
“I'm forever grateful that there's an organization like LLS to fund and support amazing breakthroughs,” Ramsey said.
She's been participating in the Big Climb since 2014 when her friend wanted to climb in honor of her sister who had been diagnosed with a form of leukemia. Now they're hooked, and Sassy Steppers not only returns every year but keeps on growing in size.
It's obvious that she isn't an emotional person, but on climb day there is an inherent emotional energy that permeates the mood. For her, it's not just about the money or the event itself, it's about the camaraderie of doing something powerful and amazing together. When it comes to recruiting people to join the team, Ramsey admits that she has some selfish reasons.
“I want people to do this for me," Ramsey said. "And of course, that will benefit other people too, but right now I will do chemo for the rest of my life and it sucks, no one is going to pretend otherwise and there needs to be a cure. Secondly, I want people to it for themselves because as much as they think they can't do this, they totally can and I guarantee when they finally make it to the top [of the Columbia Center] that they'll be amazed at what they've accomplished."
She’s passionate about the fact that no one should have any hesitations for why they can't climb, and says that during her second year she climbed only 17 days after a chemo treatment, so she won't listen to any excuses.
"Anything that can be done to help people like me who will have it for the rest of their lives is valuable. And if it means climbing a few stairs then ok, lets climb those stairs, because it means I can help find a cure."
Andrew Palmer stands 6' 5" tall, has weighed in at almost 400 pounds, projects a booming voice and sports an undeniably impressive beard. He's a man who is capable of dragging washing machines and dryers, carrying boulders, and has even pulled a 727 jet simply because, well, he can. In fact, several years ago this 37-year-old professional Strongman competed on Team USA as a world champion in Siberia in front of a crowd of 10,000 people, and loved every second of it.
He also has a blood cancer.
What started as a simple abdominal pain in spring of 2016 quickly turned into barely being able to stomach food without Palmer wincing in pain. For a guy who has an abnormally high pain tolerance given his hobby of choice and sheer size, making a visit to his doctor meant something serious had to be in the works.
His doctor confirmed that Palmer had a swollen liver and spleen, and scheduled him for a blood marrow biopsy soon after. After being told to not worry and to wait patiently for a week to get back his results, Palmer picked up the phone the very next day to hear news that rocked his world.
"My doctor asked if I was driving, which I was, and told me to pull the car over," Palmer said. "I literally parked on the sidewalk of the Space Needle and was told that I was immediately being admitted to Swedish Hospital and that my doctor didn't know when I was going to come out. My bone marrow was found to be essentially 100% cancer. The test results came with a handwritten note that read, ‘I cannot find functioning marrow in this individual’.”
When he's not working as the director of engineering at Distillery, the world's largest liquor and spirits application, much of Palmer's life revolves around improving his physical strength and being in tune with his body. Which is why his cancer diagnosis of Acute Lymphoblastic Leukemia (ALL) came as such a shock, and can appear as such an anomaly. But in reality, it is a true testament to the often unpredictable and blindsiding nature of blood cancers.
Without pre-screening options for these types of cancers, most patients have no way of knowing until symptoms appears. He admits that the juxtaposition of living as a world renowned professional Strongman who suddenly becomes a cancer patient was indeed disorienting.
“I’ve been hit by cars before and I’m fine, you know?” Palmer said. “I’ve been basically indestructible my entire life and then this happens. It was completely terrifying.”
In fact, the day he received his bone marrow biopsy Palmer had been feeling great. He had literally just set his lifetime personal bench press record at his home gym earlier that morning, and then promptly found out his platelets levels were off the charts. Nurses told him if he had gotten injured around that time period, he likely would've bled out.
And thus, regular training sessions in the gym transitioned into seven months of inpatient chemotherapy. Palmer would spend 5 days in the hospital, and then the following 14 at home. Throughout his Hyper-CVAD chemo which ran through the end of December 2016, he lost all of his hair, was feverish, utterly neutropenic, and due to the development of 4 ulcers in his esophagus, he dropped almost 70 pounds in three weeks’ time. Dealing with the fact that chemo was burning through everything he had was a mental trial indeed.
But despite his side effects, Palmer says he is well aware there are others who have it significantly worse than he. Throughout his treatment he was able to maintain most of his job responsibilities at Distillery, and found that his support system both through coworkers and his social circle of friends was paramount in his recovery.
Tears well up in his eyes as he speaks of how on the day he was admitted to Swedish, his friends showed up with a full-blown dinner party in the waiting room to make sure he wasn’t alone. Not to mention bringing a banner to succinctly sum up their feelings about the situation: “F**k Cancer”, it read. And thus, their Big Climb team name was born.
In fact, the 31st annual Big Climb in 2016 was Palmer’s first direct involvement with LLS. He first heard about the Climb after seeing a postcard sitting in his oncologist's office, and decided that despite the fact he was wildly anemic he might as well give it a go.
He claims that he can out-sprint pretty much anyone, but endurance isn't his game. So he was undoubtedly worried that with his weakened state during treatment, he wouldn’t make it up all 69 floors of stairs. But he did, and raised almost $3,000 in fundraising. Palmer plans to keep participating in Big Climb for as long as he’s able, and hopes to make it a longstanding tradition with his friends.
“It’s really infectious having thousands of people there,” Palmer said. “When you have something that really sucks in your life it just feels really good to have so many people rallying around it.”
Having a support system within your own social circle and within the community as a whole is incredibly important, as Palmer knows. He encourages those going through similar experiences to listen to their own bodies, follow their gut, do their research (but not too much research), and make sure to lean in to their support systems.
Currently considered in complete molecular remission, Palmer is confident that he made the right decisions in deciding his course of treatment with his doctors. However he's a realist who knows that he is not 'cured', and therefore is a massive advocate of supporting organizations like LLS that produce tangible change in the world of cancer.
“LLS funds the creation of new medicines like Dasatinib [also known as Sprycel]” Palmer said. “I wouldn’t be here without it."
He has become particularly passionate about funding of new drugs and therapies, because he knows all too well the inherent risks associated with certain types of treatment like a stem cell transplant which he denied.
“I don’t gamble, but I definitely took a gamble on my quality of life,” Palmer said.
But within 40 days of treatment, results showed he has no trace of leukemia cells left.
He currently goes in monthly for check-ups, and takes cortical steroids amongst several hundred other pills a month. Every Tuesday he takes 21 pills of Methotrexate, and otherwise is on about 10 pills a day. Palmer laughs about the fact that every nurse he’s ever met has told him that he takes the largest dose of chemotherapy they’ve ever seen, which honestly, doesn't surprise him.
“I’m very optimistic about new studies coming out that are leaning towards me making the right decision [about treatment],” Palmer said. “In all honesty, at worst I got 6 extra months of my life back and I feel pretty solid about that.”
Joe became ill shortly after his 5th birthday. For 2-3 weeks prior to his diagnosis, he wasn’t acting like himself. Whining all the time, very clingy to me, and complained of stomach pain. He cried every day that he went to preschool. He had never acted like that. Everyone was concerned about him and said that he was sad. The whining got worse. We noticed his stomach was unusually bloated. His cousin Adrienne had noticed his lips were frequently turning blue. I had thought I was just seeing things.
We decided to take him to the pediatrician and they treated him for constipation. Later that night he had a fever, I was again concerned because his symptoms had gone on just too long. I decided to call the night nurse at Evergreen Hospital. She suggested I go back to the pediatrician and ask them to run more tests. Upon arrival the next day the doctor that saw us was a little more concerned and suggested we take a blood test. I waited for my husband to get home from a trip as I knew the blood draw was going to be a fight. We decided to take Joe to Toys R Us for a Star Wars toy after the experience since he was so traumatized. No sooner had we walked in the door, the doctor from Pediatric Associates called - Dr. Vincent. He said he didn’t have good news, Joe’s blood work was showing signs of a possible blood cancer, and they wanted us to go to Children’s Emergency immediately.
I was in shock and didn’t want to repeat the news to my husband so I asked the doctor to tell him again over the phone. I quickly called my parents and they arrived within minutes to watch over our 7-year-old son, Paul. My mom, husband Kevin, Joe and I went off to Children’s ER. They took us in quite immediately. The blood draw went much smoother but Joe almost went into convulsions when he found out another blood draw was coming. Not soon after the results came back. They wanted to admit us for more testing.
Joe did in fact have a blood cancer, most likely a leukemia, but they needed to do a Bone Marrow aspiration procedure the next day in order to know for sure. Joe was getting sicker and sicker by the moment. They were confident that his platelets were low, the blue lips were a sign of this, as well as his stomach being bloated was a sign of a swollen spleen working overtime trying to heal the body and rid it of toxins. The first night in the hospital was quite eye-opening. Joe was in pain as the leukemia cells were beginning to press on his bones within his marrow. They gave him pain medication and had to poke him again to see if the platelet transfusion bolstered his blood work. Everyone in the family was really upset and worried.
The word cancer. No one ever wants to hear that. The bone aspiration the next day was quick and they made sure it wasn’t painful. They continued to have to poke Joe and little by little began to tell us what was next. Books, binders, paperwork, it was all a nightmare. The first good news came the next day. Joe had a kind of leukemia, ALL. A very treatable form. Although many in the room were hoping for no leukemia, I was relieved that we were given a curable diagnosis.
The real work began now. A course of treatment was given to us and we followed its path to healing for 3 years. Joe was incredibly tough throughout the entire experience. Over time, he became braver with his pokes. He tolerated the chemo well, fighting through the side effects and insisting he was “fine”. He was a legend in the clinic. After his monthly methotrexate spinal injections, he awoke and insisted on running the hallways trying to make sure his body was in working order. Tough. Amazing.
We are eternally grateful for the people before us that have supported studies and research to help find cures for childhood cancers. Without the people before us, much like our parent’s memories of their youth, adults and youth facing diseases like leukemia faced a certain death. The cure rates for all types of blood cancers are trending up! Not only do these cures help the children, but also the adults inflicted with these diseases. Shortly after Joe’s cure, my nearest and dearest friend Ann Molitor was diagnosed with ALL. She made it through treatment with flying colors and continues to enjoy a healthy life.
"Henry Streuli is my son. He's in heaven now.On July 30th, 2014 at 10:14am I was sitting in a meeting at my office conference room and I received a text from my ex-wife saying "Come to Children's." "Something about tumors" it read.
(Henry hadn’t been feeling well so she took him to his pediatrician a day or so earlier).
It was the first day of an eleven-month journey that changed my life forever. I had never heard of Burkitt’s Lymphoma before.
Henry was immediately admitted, and the double-lumen Hickman port was inserted directly into his heart. (A Hickman is a “long term” central venous catheter used to deliver chemo & other medications into Henry) The port stayed there, hanging out of Henry’s chest until he passed. He was given his first round of chemo that day. Because of the reaction to the poison they use to kill the cancer, his kidneys shut down. He was subsequently moved to the ICU. We didn't know whether he was going to live through that initial treatment for about a week and a half. He pulled through though. The hoping and praying he would pee which meant his kidneys started working finally happened. Then, of course he ended up with a blood clot. From the clot diagnosis until he passed meant giving twice a day Lovenox blood thinner shots which bruised his thighs to the point they were spotted like a Dalmatian dogs coat. He hardly ever cried but we knew it was excruciating. Then he started having liver issues.
At one point, during the first week of hell, I was visited by a couple of my company’s vice presidents. It was so nice of them to come and check on us. At one point during our visit, Bob Adams looked at me and said. “You have one job right now. It’s called Be a Daddy.” I’ll never forget that. One evening while we were in the hospital, Henry wanted to listen to his favorite band ACDC. That night, for some reason it just popped into my head about how tough this kid was. Just like that band. Electric, really cool, hard hitting, in your face and no nonsense. Oh ya, and also a warm loving sweet kid.
Blood draws, cleaning port lines, changing sheets and trying to get Henry to eat even though we knew he felt horrible were all part of it. Cat-scans, MRI’s, stem cell transplant, radiation, clinical trial drugs, alternative medicine. The list goes on that were all part of the process. At one point during the journey through hell, Henry's pain was caused by gall stones. So, they removed his gall bladder. He woke up screaming so loud you could hear him at the other end of the hospital wing through the closed door. Come to find out, there weren’t any pain meds ordered for him when he woke up from surgery. Hospital staff is trained to not be emotional but that day. When that happened. There were a few nurses I saw crying. It took two days to get his pain under control. Imagine being operated on and waking up from anesthesia with absolutely no pain medication, i.v. or otherwise.
Later in the “process” and I’ll never forget the conversation because it actually took place in the hospital hallway, Henry’s oncologist and I were talking. She told me we needed to start preparing. Take our Make-A-Wish trip. Do some things we planned on doing (within reason). In my heart, there was hope… but I also knew… We went to Alaska for Henrys Wish. He went halibut fishing and mushed Mitch Seavey’s Iditarod sled dogs. Then the kidney stones attacked and sent him back to Seattle Children’s for removal surgery. Five days later it happened.
The days and nights for eleven months were a blur. They went by way too fast.
Henry went to heaven on July 3rd, 2015 at 8:00pm, He didn’t have to fight any more. He didn’t cry. He was so strong. He WAS TOUGH. Cancer was Tough but Henry Was Tougher."
- Henry’s Dad
"In June of 2016 my amazing mother (AKA St. Jo-Anne) was diagnosed with a rare disease called Amyloidosis as well as Multiple Myeloma. When I found out the climb helped fight the disease I knew I needed to climb. One of the first symptoms for my mom's disease was that she would get winded easily going up stairs. It got to the point where she wasn't able to do them at all. It was heartbreaking to watch such a humble servant suffer and become so helpless. She was one of kindest people you would ever meet and truly a light in this world. She fought hard and was treated with chemo for a little over a year. I am thankful that the LLS organization not only helped fund the research for the drug that prolonged her life, they helped cover part of the cost of the treatment.
I can think of no better way to honor her memory then to raise money and awareness to help find a cure so no else has to suffer like she did and the world doesn't have to lose another saint."
- Margo Cassidy