Susan Allen: First Connection

The Leukemia & Lymphoma Society (LLS) offers patients and their families a number of different resources to help during treatment.  One of the most popular programs is called the Patti Robinson Kaufman First Connection Program.  The purpose is to put patients in contact with somebody who has already gone through treatment for the same type of blood cancer.  LLS does its best to match age, gender, diagnosis and treatment options when making a First Connection match.  

Read as Steve Bradbury of Fort Worth talks about his experience using the First Connection Program below.

"In January of 1992 I was diagnosed with Hodgkin’s lymphoma.  I had never heard of this and at 23 years of age I was bulletproof.   I completed three months of chemotherapy and 60 days of radiation, and ten years later I was released from my doctor.  I kept going back for two more years, cancer free.   Then in the fall/winter of 2013 I became ill, pneumonia, cough, and could not kick it. Finally the day before Thanksgiving I went for a CT.  Within ten days I was diagnosed with Hodgkin’s lymphoma again.  I was a little less bullet proof at age 45.   Luckily, I have clients who work in the cancer arena and I was put in contact with The Leukemia & Lymphoma Society. From there I found out about First Connection.

Within a few days of my second treatment I received a call from a man named Jim Omara in Pennsylvania. He had gone through treatments for Hodgkin’s lymphoma twice himself.  This call was a blessing to me.  We spoke like we knew each other for years and email each other monthly now with updates, questions and stories.  I am almost finished with my treatment and the last pet scan showed that the cancer was gone.  Jim has been cancer free for some time and I told him after I first visit, that as soon as I was done with the treatment I would be joining the First Connection to help others.  He really helped me focus on me, my treatment and I hoped I would be able to do the same for others."

Please reach out to me if you are interested in learning more about the First Connection program or would like to get involved.

Your friend, 

Susan

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Susan Allen is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She is a 22-year Hodgkin's lymphoma survivor, registered nurse and a Certified Nurse Navigator.

Contact Susan:

Susan.Allen@lls.org

(972) 996-5905

Patient Education: Making Informed Choices about Standard Care and Clinical Trials

Hello North Texas,

Clinical Trials can be a mysterious medical term that people don’t really understand.  They are a very important part of medical advancement because they pave the way for new treatments and medications. Come and spend some time with Dr. Robert Collins, an LLS-funded researcher right here in North Texas, who is involved in conducting Clinical Trials at U.T. Southwestern and learn more about the process of finding the next step in treating and curing  cancer.

Your friend, 

Susan

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Susan Allen is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She is a 22-year Hodgkin's lymphoma survivor, registered nurse and a Certified Nurse Navigator.

Contact Susan:
Susan.Allen@lls.org
(972) 996-5905

Susan Allen: Honored Heroes

Hello North Texas,

This month’s blog is a little different.  In past months I’ve shared with you about a service or an event that The Leukemia & Lymphoma Society (LLS) offers or supports. This month I want to tell you about the amazing people that LLS has the honor of knowing and working beside.

We call special patients and survivors our Honored Heroes.  They have this title because we find it important to honor them and the path they and their families have walked to become survivors after a blood cancer diagnosis.  The North Texas Honored Heroes have a very special role within our organization.  They join us in various campaigns to offer support, encouragement and serve as a reminder of why we work so hard to find a cure for all blood cancers.  

As a survivor myself I can say that when you hear the words “you have cancer” it immediately makes you a member of an unlikely club.  Although you never wanted to be a member you soon find out there are amazing people in this club and their stories are powerful. Our Honored Heroes are our partners in spreading our mission: To find a cure for blood cancers and improve the quality of life for our patients and their families. 

We value our Honored Heroes and couldn't do what we do without their inspiration.

See you next month!

Susan

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Susan Allen is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She is a 22-year Hodgkin's lymphoma survivor, registered nurse and a Certified Nurse Navigator.

Contact Susan:
Susan.Allen@lls.org
(972) 996-5905

Patient Education: Integrative Survivorship Panel

Hello North Texas,

I want to encourage you to attend a wonderful event that is being held in our neighborhood. It is an “Integrative Survivorship Panel” with a free educational dinner. The panel will feature experts discussing some essential elements of survivorship including  Survivorship Care Plan, Nutrition and Exercise, Rehabilitation and Psychosocial Support. 

As a 22 year survivor this is something that is never too late to attend. 

Hope I will see you there. 

Your friend, 

Susan

_______________________________________________________________________________

Susan Allen is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She is a 22-year Hodgkin's lymphoma survivor, registered nurse and a Certified Nurse Navigator.

Contact Susan:
Susan.Allen@lls.org
(972) 996-5905

Susan Allen: Reflecting on Day 3 of the LLS Symposium in Washington DC

Hello North Texas LLS,

Wednesday was the most important day of our trip. We were going to Capital Hill to make a difference for cancer patients. We as a group, had 352 visit’s scheduled to both senators and representatives in Congress. Each visit was important because we would  share information about two bills that impact cancer patients and their access to life-saving medication.

To start our day off we had the pleasure of hearing another amazing survivor story and how she was using her story to raise awareness about blood cancers.  Her name is Sadie Floyd and she battled ALL as a child and then went on to become a race car driver. She uses her status as a successful race car driver to display an LLS sticker on her car.  It became a platform for her to tell her story about the moment she heard the words, "you have cancer."

Congresswoman Anne Eshoo then spoke to us about the power of advocacy and how what we were about to do was important. Each year 25,000 bills are introduced into Congress and only 300 of them make it to become laws.  It drove home the fact that we needed lawmakers to hear our voices. We had been carefully trained by the LLS Office of Public Policy on exactly how the meeting structure would be and what an important role we each played at the meeting. I had the job of being both a patient and as an LLS Patient Access Manager.  I used my story and that of those who I've met in my position with LLS to talk about what resources and information patients need.  The other members of the group had the responsibility of sharing the data and importance of what our request was at each meeting. We needed these meetings to result in awareness and support of the bills that would directly effect our patients. 

We met with a lot of political staff member’s if the actual representative wasn’t available. These staff members were young people whose job it was to carry our message to their boss and it was refreshing to see them vitally interested and asking questions. We did have the pleasure of meeting with the oldest member of Congress, Ralph Hall, who happens to be my representative. He invited  all five of us into his office to sit on his blue leather furniture and make ourselves at home. He wanted to know what we needed from him and listened intently to Kim Brown and Tim Durst share our requests and without much hesitation he signed on to Co-Sponsor the bill. Thank you Ralph Hall, I always knew you were a good guy!!!!

The day started at “The Hill” with all 600 LLS advocates on the steps of the Capital taking a picture with our hands up stating “Cancer Ends With Me” and we ended with tired feet, from all the walking and a great sense of accomplishment. Let it be said that when LLS speaks, Congress listens.

Just like the last three days where we had the pleasure of hearing special survival stories, our last night there when we met at Union Station to celebrate the day, was no different. Chip Esten who stars in the TV series Nashville mingled with us, took pictures with us. He told us about his daughter Addie and how she had battled ALL as a two year old and LLS had been there for them. He and his family live in Nashville and are very connected to the Nashville Chapter.

The last three days have been an LLS whirlwind but an amazing look into the depths of LLS and what our mission “Finding a cure for Blood Cancers and improving the lives of Patients and their Families” really means.  LLS leaves no stone unturned from looking for the cures in laboratories to improving lives on the Hill and all the people working together in middle.

I want to savor the last three days and I want some of you to have the opportunity to experience and LLS Mission Day’s so you can tell your story. LLS takes paid employees and so many volunteers to make it all work. Consider using your voice, talent and skill to partner with us going forward, it takes us ALL to make it work.

Thank you for taking this trip with me and now I return to my office and welcome hearing from you all.

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Susan Allen is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She is a 22-year Hodgkin's lymphoma survivor, registered nurse and a Certified Nurse Navigator.

Contact Susan:
Susan.Allen@lls.org
(972) 996-5905

Susan Allen: Reflecting on Day 2 of the LLS Symposium in Washington DC

Good Morning North Texas LLS,

Wow, do I wish you could all be here to hear the information first hand but I am honored I get to bring it back to North Texas.  Day two in Washington DC started with Volunteer Leadership Training and, of course, our Texas volunteers were at the front table anxious to hear the latest strategies for recruitment and fundraising. It was like a think tank of all the best practices from our major campaigns that are currently used across the nation that volunteers could take back to their chapters. Without our major campaigns and their fundraising ability, our progress and future of LLS and finding a CURE would look much different.  Thank you to all of our North Texas volunteers and all you do to make LLS such a success in so many ways. Your dedication is admired and appreciated.

The lunch hour was spent listening to the story of a little boy Rhett Krawitt who was diagnosed with leukemia at age 2 and at age 6 stood on the stage yesterday and declared "Cancer Ends with Me." His father shared the story of their journey and the ups and downs of his battle.  The family relied on the statement "Gone with the Cancer", which was an obvious theme from the movie "Gone with the Wind."  (It's a family favorite as you can tell by the name Rhett.)  As his father wrapped up his portion of the program, Rhett's sister came to the stage and very proudly introduced her little brother to the stage.  Rhett, with true pride, stood before 600 of us in the audience and told us about his job of getting through the treatment and getting "the bad guys" out and finished his story by boldly stating, "Cancer, I give a DAMN!"  The audience jumped to its feet and gave him a standing ovation.

The day continued with House Majority Speaker Eric Cantor whose message was, "We cannot just be a country of good treatment, we have to be a country of CURES."  Wow, to see such an important person in our country's government speak so strongly in relation to the LLS mission was inspiring.  We spent the afternoon in preparation for our day tomorrow on the Hill.  We learned about telling our story.  As I sat at my table and listened to those around me tell theirs, I was just amazed.  There was a man who had CLL and he would not have been alive today unless he had been accepted into a three-person research study.  He was so grateful to be alive, to have his disease cured and to be in DC to tell his story to those who can make a difference for other cancer patients.

We are taking our crusade to Capital Hill and we are ready to storm the Hill!

Have a great day North Texas, I will be in touch soon.

You can read Susan's recap of the first day in DC here.

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Susan Allen is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She is a 22-year Hodgkin's lymphoma survivor, registered nurse and a Certified Nurse Navigator.

Contact Susan:
Susan.Allen@lls.org
(972) 996-5905

Susan Allen: Reflecting on Day 1 of the LLS Symposium in Washington DC

May 5, 2014

Hello LLS North Texas,

I set out for Washington DC on Monday May 5th, full of anticipation. On what is my 22 year anniversary of being diagnosed with Hodgkin's Lymphoma Stage 2B it is such an honor and privilege to be attending the "Leading Way to a World Without Blood Cancers.'  It is a three day event that will bring together researchers and scientist who are forging ahead to find a cure, volunteers leaders and passionate advocates all under one roof. We will focus on where we are today and where we are headed in the future to have the most impact on the LLS Mission, "A World Without Blood Cancer."

Monday afternoon we listened to a ten person Research Panel that included two transplant specialist, several research scientists, sweet Emily Whiltehead who is featured in our Fighting Fire with Fire video (who turned 11 on May 2nd), the parents of a child who lost the battle but they remain passionate about LLS, a pediatric and Adult Hematologist/Oncologist. Although all of the panelist are highly educated and shared their vast knowledge with us they also spoke from the heart about their passion to find a cure.

A theme that I heard from the panel is that they understand that treatment for blood cancer is rigorous and a challenge to the body due to the toxicity of the drugs and treatments. In researching and developing new options for patients their work is spent on being "specific targeting" of cancer cells through Genomic testing and paradigm shifting technologies.  That will help doctors focus their work down to the cell and gene where the cancer originated. Dr. Bradner stated, "It is a very special time in biomedical research and it should receive our full attention." At that time that Dr. Lou Degennaro, the acting LLS CEO and Chief Mission Officer, asked the panel, "How can LLS help, where should we focus our efforts to make the most impact?" The panelist were clear in the fact that their goal was a CURE and that means two things: 1. Cancer free/no medication,  and 2. Long term medication induced remission, citing CML and the fact that is is a chronic manageable disease using Gleevac. The main theme - when it comes to funding we CANNOT take our foot off the gas peddle, we must double down and go for it. It is Time to Complete our Mission and "Someday is today."

Our day concluded with two moving survivor stories that had everyone in the audience on their feet knowing that we are moving ahead and WE WILL get there. As far as my survivor story, wow, what a ride!  Going from 22 years ago with four little boys, the youngest 17 days old, a new diagnosis and a treatment protocol to an amazing "Survivorship Journey" and now  working for LLS. Amazing if I must say so myself.

More tomorrow on "Leading the Way to a World without Blood Cancer."

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Susan Allen is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She is a 22-year Hodgkin's lymphoma survivor, registered nurse and a Certified Nurse Navigator.

Contact Susan:
Susan.Allen@lls.org
(972) 996-5905

Susan on LLS Services: An Introduction

The Leukemia & Lymphoma Society (LLS) offers a wide range of offerings and services to blood cancer patients, their family members, caregivers and survivors.  In an effort to better educate people of what LLS has to offer in North Texas, we are starting a monthly series that will highlight the different services and how you can get the most out of them.

This month we introduce Susan Allen, the new Patient Access Manager for North Texas.  Susan will be writing this monthly series.

Hello,

My name is Susan Allen and I am the Patient Access Manager (PAM) for LLS.

As the PAM in the North Texas Chapter I am focused on serving our patients and their families. I am the person on the other end of the phone when they call that has the opportunity to listen to their story, find out their needs and connect them with the services that will help meet those needs. LLS is a large organization that works tirelessly to raise money for research in order to cure the patients but, the North Texas Chapter is a small family that cares about the patients on a day to day basis by offering them one on one support, co-pay assistance, educational opportunities and community resources.

My personal journey to find my way to LLS started in 1992 when I was diagnosed with Hodgkin’s Lymphoma and became associated with the Society. In 1995 I had the pleasure of participating in Team In Training and running Hawaii Marathon and have always stayed in touch with LLS. I am also a registered Nurse and a Certified Nurse Navigator so the opportunity to work with the patients and their families through their Cancer Journey is very near to my heart and something that I strive to do with excellence. What an honor to have this job and be the one to develop that special relationship with those going through cancer.

Being a 22 survivor I look forward to gathering other Blood Cancer Survivor’s and becoming a “Champions” for those that have a way to go. We can offer them hope, support and lend out voices to become advocates to make sure that those patients have access to the care and treatment that they need.

Take Care and LLS will always be there… if you need us,

Susan Allen
Susan.Allen@lls.org
(972) 996-5905