Help Support the Fight against Blood Cancers

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.

Links:

• LLS Home Page
• LLS Disease Information & Support

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!!

Links:

• LLS Home Page
• Disease Information & Support
• Ways to Help