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.
Senior Manager, Federal Affairs, Sarah Millberg (far left, blue shirt) and LLS Federal Affairs team.
Sarah Milberg is a member of the Federal Affairs team in LLS’s Office of Public Policy, working to advance LLS’s policy agenda. We asked Sarah to talk about our most recent big win—a $2 billion funding increase for the National Institutes of Health (NIH), plus a $10 million increase in the program in the Department of Defense’s (DoD) cancer research budget that prioritizes blood cancer research—and its significance for LLS and the patients to whom we dedicate our work.
Q: Would you tell us a bit about your background and your role with LLS?
A: I graduated with a double major in political science and psychology, and went on to get a Master’s degree in public policy. As a member of LLS’s Federal Affairs team, my main job is to translate LLS’s mission into federal policies that speed cures for blood cancer and improve access to care. I work on aspects of our policy goals that increase research funding at the federal level. I also head up the legislative work for policies affecting pediatric cancer research and survivorship issues, and oral parity legislation.
Q: What brought you to LLS? Where were you before this?
A: After my sophomore year of college, I interned and later worked for a member of Congress who was particularly passionate about healthcare policy. I loved helping with people’s lives, working to make healthcare more accessible, affordable, and easier to understand. After working on Capitol Hill, I worked for another patient advocacy organization. My grandfather had multiple myeloma, so work for LLS gave me an opportunity to blend what I’d learned as a professional patient advocate and apply it to what was close to home.
Q: How will LLS’s latest big win help us advance our mission of curing blood cancer?
A: The more investments that are made in blood cancer research, the more researchers are attracted to the field, and the more research dollars there are to fund grant applications. For example, increased funding for the DoD’s medical research program will allow it to continue exploring and finding cures for blood cancers that have a connection to military service.
Q: How will blood cancer patients benefit from this win?
A: These wins will lead to more research, which ultimately will lead to more innovative treatments.
Q: What kind of lobbying strategies make big wins happen?
A: We stay in constant communication with other members of the cancer community, pound the pavement on Capitol Hill, and bring congressional offices face to face with cancer advocates. Patients, survivors, and caregivers are the best messengers for making the case for increases in research funding. Their stories help lawmakers understand why research is so important. LLS staff and our advocates are very persistent!
Q: What is the Childhood Cancer STAR Act (H.R. 820/S. 292)?
A: The STAR Act is the most comprehensive childhood cancer bill ever passed by Congress, designed to advance pediatric cancer research and treatments, and provide enhanced resources for survivors.
Q: How will our win serve the STAR Act? What kind of research will it support?
A: By allowing NIH to fully implement the STAR Act, this win will create new funding opportunities for pediatric cancer research. It will also support the creation of centralized research resources, including a central biorepository for pediatric cancer that will give researchers access to tissue samples and data for their studies. And, it will support efforts to understand how cancer survivors interact with the healthcare system, and how their psychosocial needs are met during and after treatment.
Q: What is your roll with the Alliance for Childhood Cancer, and what do you hope accomplish in this role? What’s already been accomplished?
A: LLS co-chairs the Policy Committee of the Alliance for Childhood Cancer, and I serve as LLS’s representative in fulfilling that role. The Policy Committee sets the Alliance’s legislative agenda. We succeeded in getting the STAR Act passed and funded this past year, and we will continue to focus on ensuring that STAR is fully implemented and funded in the years to come. With this big win, we can now explore other policy changes that will help accelerate pediatric cancer research, improve access to care, and address the needs of childhood cancer survivors.
Q: What about this work inspires you?
A: Every year we have the opportunity to make our case for increased research funding. Research funding is incredibly bipartisan – everyone can appreciate the need for curing cancer. It’s a great unifier. Also, the research that comes out of NIH and DoD is really interesting! It’s wonderful to see breakthroughs happen even if they’re small. One grant could lead to the next big thing. Patients inspire me too. Their stories are the strongest tools in our arsenal. I wouldn’t be able to push for these wins if I didn’t have the backing of over 100,000 LLS advocate volunteers behind me.
Q: What are LLS’s insurance coverage principles, and what are you and the LLS Office of Public Policy doing to advance them?
A: The LLS Coverage Principles define the core tenets of meaningful insurance coverage—essentially, the policy protections that must be in place to ensure that cancer patients can use their insurance to access their care when they need it. The Coverage Principles are: access to care, quality of insurance, affordability of care, and stability of coverage. We use the principles as a rubric for assessing healthcare proposals coming out of Congress, the Administration, and state capitals, to ensure that healthcare policies will serve the best interests of cancer patients.
Q: What’s next on your LLS policy to-do list?
A: We’re planning for a busy end to this Congress and a just-as-busy beginning for the new Congress that will be sworn-in in January. Changes in Congress and any new proposals from the Administration will play a big role in what we focus on at the end of this year and the start of next calendar year. We’re refining our strategies to advance all our policy priorities, including reducing patients’ out-of-pocket costs, lowering the cost of quality health insurance, protecting access to vital programs like Medicaid, making the healthcare system more sustainable, and increasing federal investments in research.
Left to right; Sarah Milberg, LLS Senior Manager, Federal Affairs, Corinne Alberts, LLS Office of Public Policy, Mark Rubin, LLS Advocate, Phyllis Osterman, LLS Advocate, Rep. Brian Higgins (D-NY-26) and Daniel Robertson, LLS Advocate.
Learn more about The Leukemia & Lymphoma Society’s Office of Public Policy here.