After Eevie was born, she was diagnosed with a rare form of childhood blood cancer that affects 1 in 5 million newborns. She was given a 17 percent chance of surviving to age 2. This month, Eevie celebrated her fourth birthday. Each year her mother, Brynne, has shared her progress on this blog (you can read those stories here).
The last year has been incredible. The first word that comes to mind is “freedom.”
As a result of her cancer treatments, Eevie was immunocompromised for years leaving us completely confined. Our mobility was limited to oncology floors at the hospital. For months at a time we could not even leave our hospital room.
Sometimes, we had to hold Eevie fully gowned and gloved. We had to kiss her though masks. Even when we left the hospital, we lived in constant fear.
Due to her compromised immune system, she was unable to receive vaccines. I worried every time I heard that there was an infectious disease outbreak on the news – from measles to chicken pox.
What if I touched something contaminated at the grocery store? What if someone sneezed on my coat that touched the couch and Eevie sits on it? Any germ can be deadly to a child with no immune system.
Today, we have the freedom to go to the store without fear. Eevie can sit in the grocery cart like a typical kid – she loves shopping for Cheetos and grape juice.
We can go to the park and even the zoo. It’s an incredible feeling to see Eevie touch the monkey bars and feed the goats without worrying about staph infections, flu, and other diseases that could be life threatening for her.
We can have relatives over. We can watch her laugh and play with other children. The start of preschool is a big deal for many families. For our family, it symbolized so many things. I sobbed the day her school accepted her – with her feeding tube and all.
Each morning I get to dress her in her little plaid uniform. I still tear up when I watch her skip down the hall towards her classroom. On the way home, I get to hear all the preschool gossip. Eevie is quite the social butterfly.
During a recent parent-teacher conference, we were thrilled to hear that Eevie is “right on track.” Her teacher even said her empathy and social skills are advanced. For a child who was poked, prodded and isolated for so long we are in complete awe and extremely proud of her.
The biggest milestone of this year was overcoming the feeding tube. Eevie stopped eating when she was just a few weeks old. A complication of her chemotherapy was that she had sores in her mouth and throat called mucositis. The sores made it too painful for her to suck a bottle or breastfeed.
When she started using a feeding tube, we had no idea just how hard it was going to be to regain the ability to eat again independently. The feeding tube remained for more than three years – she needed it to gain weight. She was only 15 pounds at two years old.
Today, she is feeding without a tube. This particular freedom has been amazing. This is the first year she has enjoyed Halloween candy. Santa is going to fill her stocking full this year!
This year, Eevie was selected to be The Leukemia & Lymphoma Society’s Girl of the Year in the Mid-America Chapter. She had an amazing time and danced until midnight. It was magical.
We went on a family vacation with our pug mix Annie and our Bullmastiff Francis to our favorite place, Breckenridge, Colorado. Eevie started ballet at our local YMCA. She fed the sheep at the zoo, rode a miniature horse, and went to a classmate’s birthday party.
There are no more repeat rounds of chemotherapy, spinal taps, and serious infections. People don’t stare at us any longer. We don’t wipe down counters with antibacterial spray at restaurants. We don’t have to cover her in burn cream and gauze because of the severe reaction she experienced at age two. We don’t have to change IV dressings. And we don’t have to place feeding tubes. We just live. We live free.
Eevie’s fourth birthday is November 10. I never thought I would get to see my baby turn into a big kid. My husband and I will never know exactly why Eevie made it through all that she did.
We do know that the lifesaving research funded by The Leukemia & Lymphoma Society has been paramount to her success. Our family is so thankful for all that LLS does to help families like ours. Because of LLS, Eevie has been able to experience love, laughter, and freedom.
Reflecting on the last four years, I must say that in every way Eevie truly lives up to the meaning of her name “Life Warrior.” She is a light in the darkness. A symbol not to give up hope. And she makes me want to be a better person every day.
Brynne and her husband, Ryan, live in Wichita, KS. Ryan is a police officer and Brynne is a psychologist. Eevie is their first and only child. To read more stories about Eevie, click here.
Burlington Stores and The Leukemia & Lymphoma Society (LLS) surprised Mateo Rubio – a three-year-old boy with acute lymphoblastic leukemia (ALL), and his mother, Ana Torres – each with a gift card to Burlington, to help bring light to the darkness of cancer and to help purchase new belongings following the destruction of their home in Hurricane Harvey.
The generous gesture was part of LLS’s Random Acts of Light campaign, which generates awareness for the LLS flagship Light The Night fundraising effort, and the urgent need to raise funds for cancer cures. Burlington is honored to support LLS’s efforts for the 16th consecutive year – teaming up to raise much needed funds at all Burlington store locations nationwide, for life-saving research and treatments.
Mateo’s mother bought their first home in Houston in December 2016. Shortly thereafter, Mateo was diagnosed with ALL in January 2017 – and in August, Hurricane Harvey destroyed their home and they lost everything, as they lived in one of the hardest hit areas of the city. Mateo’s car seat was ruined during the storm, but Ana was able to get a brand-new one at Burlington.
“We lost pretty much everything in the hurricane, you name it we lost it,” said Ana. “This amazing surprise from Burlington and The Leukemia & Lymphoma Society shined some joy back into our lives, and we are so thankful.”
While Mateo is being treated at the University of Texas MD Anderson Cancer Center, Ana is living with Mateo’s grandparents – and working to coordinate his hospital visits with her work schedule and no vehicle. Everything they owned will need to be replaced while caring for Mateo during his treatment.
Random Acts of Light brings light to the darkness of cancer by surprising blood cancer patients and survivors with unique and thoughtful moments, including some with favorite athletes and celebrities.
Customers shopping at any Burlington Store now through December 9th can donate at checkout to benefit LLS, helping to find cures for blood cancers. For more information visit BurlingtonStores.com or LLS.org.
We’ve seen therapies for patients with blood cancers approved this past year at a pace that would make your head spin.
With the latest U.S. Food and Drug Administration (FDA) approval coming just today, I thought it would be a good time to take a step back and look at all of the remarkable progress that has occurred in this year alone. Today’s approval marks the eleventh therapy for a blood cancer approved in 2017, many of which are the result of groundbreaking discoveries supported by LLS funding.
This is a testament to our sustained investment in research leading to a new era in cancer treatment, allowing innovative new treatments to get to patients at an unprecedented speed and in disease areas previously thought impossible.
Today the FDA approved a targeted therapy called acalabrutinib (Calquence) that works by blocking an enzyme that allows cancer cells to proliferate. The FDA accelerated this therapy’s approval to treat adult patients with mantle cell lymphoma (MCL) who have failed to respond to or have relapsed from at least one previous treatment. Today’s approval is good news for patients with this aggressive disease, which makes up approximately six percent of all non-Hodgkin lymphoma (NHL) cases. NHL strikes more than 80,000 patients a year in the United States and causes more than 20,000 deaths.
As with most of the therapies approved this year for the blood cancers, LLS played a role in this advance. We have been a long-time supporter of John Byrd, MD, at The Ohio State University Comprehensive Cancer Center. Byrd has been conducting research on acalabrutinib, as well as a previously approved therapy, ibrutinib, both of which target the same molecule called Bruton’s tyrosine kinase or BTK in B-cell malignancies. You can read more about this approval here.
But there’s more.
Consider acute myeloid leukemia (AML). This deadly blood cancer, which kills more than 10,000 patients in the U.S. each year, has seen little progress in more than 40 years. That’s why LLS launched our Beat AML initiative almost one year ago. Read more about that here.
But thanks to advances in technology that allow greater understanding of the multiple subtypes of this cancer, and more investigational agents in the pharmaceutical pipeline than ever before, we are seeing things rapidly change. Since April, the FDA has approved four new drugs to treat AML, each designed to precisely treat a specific subtype of the disease. After four decades and millions of dollars invested, we are finally seeing results for AML patients that give us real reason for hope. Read more about these advances here.
Harnessing the immune system
Scientists have found ways to supercharge the body’s own immune system to fight cancer, resulting in two historic immunotherapy approvals, one in August and another at the beginning of this month. This therapy, known as chimeric antigen receptor (CAR) T-cell immunotherapy, reprograms the body’s T cells to find and kill the cancer cells. All it takes is one infusion of this highly personalized therapy. It is not without risks. Many patients experience some very serious side effects but doctors are figuring out how to mitigate these responses. But for most patients, the side effects soon subside and they go on to resume their normal lives.
The therapies are approved for patients with relapsed or refractory acute lymphoblastic leukemia (ALL) and NHL, and many of these patients who participated in the clinical trials that led to these approvals are now alive five years or more after their treatment. Now more studies are being done in other blood cancers and even in solid tumors. LLS has supported work in this area for more than two decades – a $40 million investment at multiple institutions. And we’re continuing to support this work, investing in research to make these therapies safer, easier to manufacture and more widely available. You can learn more about the history of CAR-T and our role here.
Other approvals this past year include another type of immunotherapy to treat patients with Hodgkin lymphoma, a targeted therapy for ALL, and a therapy for follicular lymphoma. In addition, ibrutinib received approval for a new indication – to treat patients with the life-threatening condition called graft versus host disease, which frequently occurs in patients receiving stem cell transplantation.
Even with such exciting news, we can’t stop now. Since our founding more than 68 years ago, we have recognized the urgency of finding new and better treatments, particularly in areas of unmet medical need. We will keep forging ahead until we can achieve a world without blood cancers. Please join us in this quest.
Louis J. DeGennaro, Ph.D., is CEO and president of The Leukemia & Lymphoma Society.