Diagnosed at birth with a rare leukemia, Eevie had a 17 percent chance of making it to age 2. Now 18 months old, she continues to defy the odds as she marks the same milestones as others her age.
Her parents, Brynne and Ryan, report that she is all smiles and is a very happy (and thankfully ornery) little girl. Eevie was assessed and dismissed from physical therapy as she is "right on track." She is walking around the house, trying to put on Mommie's shoes, and is saying multiple words. Eevie loves to make animal noises (mainly the tiger, her inspirational mascot) and growls often! She is a HUGE Minnie Mouse fan and enjoys hugging and kissing her Minnie as well dancing to the Mickey Mouse Clubhouse songs.
Her parents are optimistic about her prognosis.
“I feel like I'm the luckiest mom alive,” said Brynne. “All of the odds say she shouldn't be with us and she is. What a gift."
As far as her study protocol, Eevie is nearing the middle of the maintenance phase of her treatment for congenital acute lymphoblastic leukemia(ALL). She is currently taking low-dose IV, oral, and intrathecal chemotherapy. Eevie still struggles with swallowing and thus remains on her feeding tube. She is working with a speech therapist once a week. She enjoys licking KitKats and Pizza crust, but that's about it.
Though research on congenital ALL is extremely sparse, one study reports that by this time in treatment, very sadly, 27 of the 35 babies in the study had passed (van der Liden et al., 2009). If Eevie lives to age two, her odds of beating the disease increase to 85-90%. Her parents are often reminded that she is at high risk for relapse and multiple side effects of her treatments (e.g., secondary cancers, growth problems) but they choose instead to focus on her incredible progress and fierce spirit.
No one expects to be told they have blood cancer. Some people may have gone to the doctor’s office for a physical or only had a minor complaint, and left with a life-changing diagnosis they never saw coming. Others may have been feeling poorly for months before finally getting a diagnosis. For still others, it all happened so fast that their heads are still spinning.
Regardless of how you came to your blood cancer diagnosis, most people report not having absorbed a lot of information after hearing the word “cancer." The learning curve can feel steep, the vocabulary seems like a foreign language, and the need for support is tremendous.
It’s absolutely normal to feel blindsided and overwhelmed and have trouble processing new information in such an anxiety-producing situation. After all, the important questions don’t always come when you’re sitting in the doctor’s office.
This is where the Information Resource Center (IRC) at The Leukemia & Lymphoma Society (LLS) comes in. We provide information and support to those with leukemia, lymphoma, myeloma, myelodysplastic syndromes andmyeloproliferative neoplasms. Especially if you’re still reeling from the news, it can be reassuring just to talk to someone who is very familiar with your diagnosis.
As information specialists, we’re trained to give you accurate up-to-date information about your disease and treatment options. We can also assist with financial and social challenges, and connect you to other resources for additional help. LLS offers a number of services you can tap into from home:telephone and web education programs, online videos, discussion boards, andonline chats. Other offerings include copay assistance, a peer-to-peer support program and publications.
Some people know very little about their disease. They may have had it for years and still not know exactly what it is or what drugs they’ve been treated with. Others have done extensive research, are very knowledgeable and keep tabs on all the latest developments. They can all get assistance from the IRC.
People often call with specific questions or sometimes just to see what we might be able to help with. We welcome all calls. Anyone newly diagnosedwould likely benefit from getting a second opinion, particularly at a National Cancer Institute-designated cancer center. Finding a hematologist-oncologist who treats your disease regularly and is familiar with the latest advances can be invaluable. We also have suggestions on how to get the information you need during your appointments. We suggest bringing a companion with you to appointments to take notes or record the conversation. We can also help you come up with questions to ask at your next appointment or come up with a few “next steps."
Sometimes when someone get a diagnosis of chronic lymphocytic leukemia or an indolent lymphoma they are told the treatment plan is to “watch and wait.” That can be very unsettling because it is counter-intuitive to the way we are accustomed to think about cancer treatment. We can explain in simple terms why this approach really does make sense.
In cases of acute leukemia, where treatment may need to start immediately, patients and families may reach out to the IRC after some of the initial flurry of testing and treatment has quieted down. They have questions about the disease and the treatments but also need a place to help make sense of all that they have been through. We strive to educate and support all newly diagnosed blood cancer patients and to be there for them throughout their journey.
We believe that it is important to know all your treatment options, including clinical trials, at all stages of treatment. We have a clinical trial coordinator who does customized searches and is able to support patients throughout the process of finding an appropriate trial.
What if you need immediate treatment and don’t know how you’re going to pay for it? How can you prepare now if you know you will have to undergo a transplant? Is there a benefit to having an excisional biopsy rather than a needle biopsy? Is there someone you can talk to who has the same diagnosis? How can you tell your children about your diagnosis?
The questions keep coming when you’re dealing with a blood cancer and you don’t have to learn everything at once. It’s normal to want to share what you’ve been through but you may not always think to reach out. Once you understand what you have and how to treat it, the knowledge can bring a sense of relief and be incredibly empowering. We want patients and families to know that we are here for them throughout their journey.
You can reach LLS’s Information Resource Center by calling (800) 955-4572 Monday to Friday, 9 a.m. to 9 p.m. ET. Visit Newly Diagnosed: First Steps for more information.
When Tracey learned that his cousin’s son, four-year-old Parker, was diagnosed with acute lymphoblastic leukemia in 2011, he was motivated to act – in a big way. “I wanted to take on a challenge and create a project to try to match the enormity of Parker’s cancer diagnosis,” said Tracey. He had already done a race with LLS’s Team In Training, so immediately signed up to run back-to-back marathons while raising funds for research and blogging about Parker and what his family was facing. After the races, he created “The Flat Parker Project.” “It was important to continue to be with Parker on every step of his journey from diagnosis to remission, which we knew could be over three years,” Tracey said. “And through the Flat Parker Project we could continue to tell his story, educate others on leukemia and, importantly, create a fun distraction for Parker and his family during a such challenging time in their lives.” Flat Parker, a 12-inch flat wooden caricature made in the likeness of the real Parker, has been traveling throughout the US and the world for Parker, an adventurous boy who loves to explore, but cannot travel because of his diagnosis. In 2012 Flat Parker traveled all “50 States in 365 Days” and is now on a 2014 World Tour trying to visit all seven continents. He was hosted by the family of an NHL hockey player, in Sochi, Russia, for the Olympics. He’s been to China with a family adopting a special needs child there, and most recently was in Brazil for the World Cup. And who knows, maybe he will make an appearance here in White Plains, NY at the LLS office when he makes it to North America! Parker, now seven, has endured three years of battling cancer, and while he is doing well now, he is still undergoing treatments. Parker and his family have been involved with LLS since shortly after his diagnosis. He was named this year’s "Boy of the Year" of LLS’s Michigan chapter, attending the closing ceremony of the Man & Woman of the Year campaign last month. In 2012, he was the honored hero for the Downriver, MI, Light the Night Walk. “The Flat Parker Project has been a great way to raise awareness about blood cancers and LLS,” Tracey said. “Through it, others have been inspired to act and it has offered hope to many others who have been touched by blood cancers. No one should face cancer alone. Through Parker and his flat buddy, we have created a community - a family of supporters.” Parker’s parents say the project has kept the whole family entertained and distracted, especially during the dark times. They continue to be inspired by the comments and emails coming from people they have never met that pour in from around the US and world, thanks to connections made through social media. You can join Flat Parker on his adventure to travel the world, along with Parker’s journey battling leukemia, through the Flat Parker Facebook page and blog at flatparker.com!!
Please meet Ashlee Jensen.
In February 2013, Ashlee was diagnosed with stage 3 non-Hodgkin lymphoma. At age 19, the odds in receiving such a diagnosis was one in three million.
Just a few months prior, Ashlee was unusually fatigued and noticed lumps in her neck. As time passed, she started feeling itchy and irritated, and attributed the change to the weather. But when the lumps in her neck spread and increased in size her dad insisted Ashlee call the doctor.
After a misdiagnosis of mononucleosis and strep throat, she visited an ear, nose and throat specialist. And upon seeing hundreds of swollen lymph nodes in her neck, the doctor referred Ashlee to Cancer Care Northwest in Spokane, Washington. At the Fred Hutchinson Cancer Research Center in Seattle, Ashlee was now being treated for what is one of the rarest cancers for someone her age.
Regardless of losing her hair, her job and not being able to attend school, Ashlee was willing to do whatever it took to get rid of the cancer. After enduring chemotherapy every three weeks, three times a day for six months, her cancer showed no sign of remission. As a precaution however, her doctors collected and froze her stem cells with the possibility of using them as part of a future therapy.
A quick update from Ashlee: “It has been crazy crazy! My cancer is progressing and not responding to treatments! I will once again be starting a new chemotherapy regimen because in order to be a candidate for a bone marrow transplant, I need to be in a slight remission. I’m just hoping something will work for me.”
“I began to appreciate every moment I had and wouldn’t change my life for anything. Fighting to get better has just become a part of me now. I still want to be the young teen I’m supposed to be”, says Ashlee.
If you or a loved one is diagnosed with a blood cancer, please contact our Information Resource Center at 1-800-955-4572.
As the leading global nonprofit dedicated to finding cures and ensuring access to treatments for blood cancer patients, The Leukemia & Lymphoma Society (LLS) is building on the successful launch of its Someday is Today brand platform by asking the public to Declare It. Cancer Ends With Me - a strong call for consumers to engage with the LLS mission.
In February 2013, LLS launched a bold new campaign, including a unique public service announcement (PSA) declaring that we're closer than ever to cancer cures. The organization is taking it a step further, to show that every individual can make a positive impact in the fight against blood cancers, and it's using traditional media and extensive social outreach to create a groundswell of awareness for the LLS mission.
"With Cancer Ends With Me, we're making it personal," explains LLS Executive Vice President and Chief Marketing Officer, Lisa Stockmon. "This is the next phase of our Someday is Today platform; we are creating a movement to show that we can all impact the fight to end blood cancers. We're leveraging every channel possible to spread the word, including a new PSA, Out of Home advertising, compelling social media messaging and inspiring survivor stories of hope and inspiration, to compel the public to participate in our fundraising campaigns or donate to LLS directly."
Declare It. Cancer Ends With Me.
Over its 64 year history, LLS has invested almost $1 billion in research to advance breakthrough treatments in its quest to make someday, today, for blood cancer patients. As there are no means of preventing or early screening for most blood cancers, LLS focuses on finding cures and improving the quality of life for patients and families.
"Thanks to research and better treatments, survival rates for many blood cancers have doubled, tripled and even quadrupled since the1960s," states LLS President & CEO, John Walter. "But, despite these advances, more than a third of blood cancer patients don't survive five years after diagnosis. That's why it's vital for us to continue to generate awareness for our mission and raise funds to invest in cures and access to lifesaving therapies."
CancerEndsWithMe.orgVisit our new mobile and tablet optimized site, www.cancerendswithme.org to learn more and Declare It. Click the "Discover" button and be inspired by compelling survivor story videos. Make your own declaration on the site and share it on social media using #cancerendswithme. LLS is also on Facebook and Twitter.
About The Leukemia & Lymphoma SocietyThe Leukemia & Lymphoma Society® (LLS) is the world's largest voluntary health agency dedicated to blood cancer. The LLS mission: Cure leukemia, lymphoma, multiple myeloma, and improve the quality of life of patients and their families. LLS funds lifesaving blood cancer research around the world, provides free information and support services, and is the voice for all blood cancer patients seeking access to quality, affordable, coordinated care.
Founded in 1949 and headquartered in White Plains, NY, LLS has chapters throughout the United States and Canada. To learn more, visit www.lls.org. Patients should contact the Information Resource Center at (800) 955-4572, Monday through Friday, 9 a.m. to 6 p.m. ET.
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