The Leukemia & Lymphoma Society (LLS) has helped millions impacted by cancer throughout their almost 70-year history. But the fight against blood cancers cannot be won without support.
LLS’s Light The Night fundraising campaign continues to help light the path to cancer cures and give hope to cancer patients nationwide. Through Light The Night, thousands of national partners, sponsors and corporate teams, including Burlington Stores, Pharmacyclics, Janssen, Walgreens and Wawa, are helping LLS fund lifesaving research and support for patients battling cancer. It is because of the lifesaving advances in treatments that more patients are surviving cancer.
Life after cancer was once unimaginable. No one forgets that he, she or a loved one once had cancer. Many survivors progress to a "new normal." Adjusting emotionally is a process that takes time. But survivors might also find that, in some ways, the new normal is as rewarding and gratifying than life before cancer.
As LLS’s National Presenting Sponsor of Survivorship and Hope, Pharmacyclics and Janssen are committed to working with LLS through its Light The Night fundraising campaign to shine a spotlight on what it means to be a cancer survivor.
“We are honored to sponsor The Leukemia & Lymphoma Society’s Light The Night Walks in support of their efforts to help patients and caregivers through their blood cancer journey from diagnosis to treatment, and ultimately to their new normal,” said Dr. Roula Qaqish, Head of Medical Affairs, Pharmacyclics LLS, an AbbVie company. “Through The Leukemia & Lymphoma Society and this incredible nationwide movement, we look forward to helping further educate the public and empower patients in blood cancer community.”
Dr. Andree Amelsberg, Vice President of Medical Affairs at Janssen Oncology, added, “The Light The Night campaign is the perfect platform for partners and sponsors like us, as it allows us to bring our messages of support directly to blood cancer communities across the country. LLS holds 140 Light The Night Walks each fall, providing a meaningful opportunity to reach many of the 1.3 million Americans living with or in remission from a blood cancer as well as their loved ones.”
LLS thanks all its 2018 National Corporate Partners to bring us one step closer to finding cures, including #1 Corporate Partner and Honored Friend: Burlington Stores. National Presenting Sponsor of Survivorship and Hope: Pharmacyclics and Janssen. Leading Lights: Walgreens; and The Wawa Foundation. Luminaries: Amgen; Astra Zeneca; Barclays; Carter’s; Celgene Corporation; Elbit Systems of America; FIS; Genentech/Biogen; Kite, a Gilead Company; Great American Cookies®, Marble Slab Creamery®, MaggieMoo's Ice Cream & Treatery®, Pretzelmaker®, Hot Dog on a Stick®, and Round Table Pizza®; Pfizer Oncology; Stater Bros. Charities; Takeda Oncology; and The United Food and Commercial Workers (UFCW), LLS’s longest standing partner.
LLS and the 2018 Light The Night National Corporate Partners share the goal to support patients and caregivers through their cancer diagnosis and treatment – through ground-breaking research efforts, continuous advancements in treatment and educational resources to inform and empower.
Learn more about The Leukemia & Lymphoma Society and Light The Night, volunteer, participate or donate. Visit www.LightTheNight.org for more information.
After Eevie was born, she was diagnosed with a rare form of childhood blood cancer that affects 1 in 5 million newborns. Doctors gave her a 17 percent chance of surviving to age 2. This month, Eevie celebrates her fifth birthday. Each year her mother Brynne has shared her progress on this blog (you can read those stories here).
Turning five is a true milestone. For Eevie, it feels epic. It feels that way for me too. When Eevie was born with cancer, all I saw was the beginning of a painful end. Now, I see the ending of a painful beginning.
I remember her lengthy hospital stays, scrolling through social media and weeping as I read other moms' posts about their children's milestones — beginning a new sport or their first day of kindergarten. Not once did I think that I would get to experience those things. I wouldn’t let my heart go there. Now, the dreams I wouldn’t allow are becoming realities.
This fall, Eevie began pre-k/kindergarten. I can hardly believe it! I’m so thrilled to report that she is doing amazingly well, and right on-par with her classmates. At parent-teacher conferences, Eevie’s teachers told us that she has a great deal of empathy and is “a very good friend;" she thinks about others and wants to “fix it” when another child is upset.
She is also involved in not one but three new sports: soccer, swimming, and gymnastics! At home, she's a daydreamer (I often find her making up songs and stories). She has two imaginary friends — Brenda and Item — who she insists live across the street. And, for a five-year-old she is quite the fashionista, waking up early to create ensembles complete with matching headbands and jewelry. She also remains a HUGE Mickey and Minnie Mouse fan.
Our main challenge has been growth. Newborns diagnosed with congenital acute lymphoblastic leukemia struggle to match their peers on the growth charts. Eevie currently weighs 31 pounds and stands 39 inches tall. To help her catch up, we give her a human growth hormone (HGH) injection six days a week. We call it “little tiny poke." It's no fun giving her a shot every night but the pain is minimal compared to the pain she experienced from chemotherapy. Honestly, I feel very thankful that HGH is all we have to give her.
Eevie sees an endocrinologist every three months and a dermatologist every six months. Also, every six months, she sees an oncologist and has blood work done. Other than that, we are treatment free! Getting her to eat is still somewhat of a battle.
During the past four years, she worked very hard in speech learning how to swallow. She has now completed speech therapy, is feeding tube-free, and a huge M&M and chicken wing fan!
Going forward, we must watch for secondary cancers, a risk from the amount and intensity of chemotherapy Eevie has received since birth. She is at particularly high risk for skin cancer because she is of Irish descent and has sensitive, light skin. She cannot wear traditional summertime clothes. Her dermatologist has instructed us to dress her in SPF 50 clothing. She has many outfits specially-ordered from companies that skin cancer specialists recommend.
Sometimes, when I reflect on what happened to Eevie, it feels like a story; almost like it happened to someone else. Other times, I can feel my heart race and my hands shake as the terror of it all comes rushing back in.
But recently, I have been feeling something quite new: the "gosh they grow up so fast" feeling that I never thought I would have the privilege of experiencing. Nowadays, I find myself tearing up not out of sadness and loss but out of gratitude and awe.
The Leukemia & Lymphoma Society (LLS) has helped us every step of the way. LLS has been an anchor when we needed support and a light when all we could see was darkness. The research that LLS supports and advances gave me something to hold on to when I had nothing else to grasp. This research has made it possible for our family to set sail in one week on the Disney cruise ship “Fantasy” to celebrate Eevie's epic five-year milestone; it is the reason why we can say “bon voyage” to a painful past and "welcome" to a new beginning.
Professionally, I am an architect. I have designed housing, theaters, libraries, a police station house, social service facilities, cultural centers and museums.
I am also a builder of communities, working with local organizations to help alleviate poverty, violence, and social disenfranchisement.
You could say that I’ve spent my life building spaces where people could grow. I never imagined, however, that I would someday have to rebuild my own.
In February 2015, after experiencing months of excruciating and debilitating back pain that doctors mistakenly attributed to deteriorating lower lumbar discs, I had an MRI that revealed multiple vertebral compressed fractures. My new doctor, suspecting multiple myeloma, immediately ordered blood work.
While I awaited the results over several days, my health declined rapidly and I landed in the hospital intensive care unit, where I spent the next three weeks receiving treatment for anemia, dehydration, a-fibrillation, and kidney and liver failure. While I was there, I also received a diagnosis: multiple myeloma.
Although my hospitalization and subsequent participation in a clinical trial stabilized me, I faced severe physical limitations. The multiple compressed vertebral fractures left me with a deformed spine, atrophied muscles, an inability to perform basic functions and a body wracked with pain. Despite tremendous support from friends, community and my partner, Joan, I was not prepared for the uncertainty that lay ahead.
Joan tried mightily to comfort me. She had a hospital bed delivered to our home, and asked one night to lie behind me. At first, I could not bear the thought of her touching my back. After all, just the shower or clothes against my skin hurt. But eventually I agreed, deeply touched by her loving persistence.
Nevertheless, I felt lost and paralyzed. I had no schedule or daily structure. I was in pain, unsteady on my feet and scared. I spent hours doing basic things that once took minutes — using the bathroom, washing, getting in and out of bed, dressing, traveling to the hospital for chemotherapy and lab work. How would I rebuild my life?
There is a narrative of loss, tragedy and death that stigmatizes people with cancer. I noticed colleagues, friends, and even family responding to me as if I had a death sentence. At work, no one asked what tasks I could and could not handle, or how they could make reasonable accommodations. Instead, they terminated me. This is just one reason why many people conceal their cancer. I did the opposite: I embraced mine.
I created a schedule for cooking, eating, having physical and occupational therapy, and working with the health care professionals who made home visits. I regularly invited friends to accompany me to appointments for chemotherapy and lab work. Although I needed to rest during the day, I began — and continue to — exercise vigilantly to slow down further deterioration. I also searched for support groups and people with the same diagnosis. The Leukemia & Lymphoma Society has been especially helpful in providing medical and financial resource information.
Three years after my diagnosis and now in partial remission, I have come to accept my cancer and my new self. I can't live my life as before, and yet, where some doors have closed, others have opened. I am more emotionally open and available to friends. I feel deep joy and gratitude for their and my healthcare providers’ support and love. I am more curious about what is happening around me. And, I am open to the unknown. I don’t feel anxious about the uncertainty ahead but excited about the promise of the future. My concerns, insecurities, anxieties, depression, anger, and joy are not going away. They are the material with which I am rebuilding my life.