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Showing posts with label first connection. Show all posts
Showing posts with label first connection. Show all posts

Wednesday, November 2, 2016

National Caregiver Month: How LLS Cares for the Caregiver


November is National Caregiver Month. Caregiving can be a lonely experience. Caregivers often don't feel they should be seeking support for themselves, but the best way to care for a loved one is to care for yourself. There are several ways to reach out to others who are in similar situations or have recently been through a similar experience.

LLS offers a number of helpful resources. For more information about any of the services listed below, contact an LLS Information Specialist.
  • Weekly Online Chat for Caregivers. Our live, weekly online chat provide a friendly forum to share experiences and chat with other caregivers. Each chat is moderated by an oncology social worker.
  • Patti Robinson Kaufmann First Connection Program. First Connection is a telephone support program that links you with a trained peer volunteer who has experienced a similar situation. Anyone with a blood-related cancer, as well as caregivers, is eligible to receive a call or visit. There is no charge for this program.
  • LLS Blood Cancer Discussion Boards. Meet your peers online and share thoughts and experiences on our Blood Cancer Discussion Boards.
  • Family Support Groups. LLS's Family Support Group program is open to patients, family members and caregivers. Volunteer nurses and social workers professionally lead the groups. Contact the chapter nearest you to find out about Family Support Groups in your area.

Getting Information:

Caregivers often become the primary "researchers" for disease information and support in an effort to assist the person with cancer and to help him or her better understand the disease, treatment options and side effects.

LLS offers free materials and services designed to simplify this search for information and support. Navigate the Resources for Patients and Caregivers tab at the top of this website for disease information, support and education resources, or contact an LLS Information Specialist.
Never hesitate to contact me directly if you have questions about any of these services or need help getting access to them.  
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Seetha Modi is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She has an Masters in Public Health and has experience working with varied aspects of the healthcare industry, including hospitals, the CDC and other health-related nonprofit organizations.

Contact Seetha:
(972) 996-5905

Wednesday, March 9, 2016

LLS/Baylor Patient Advocate: Myeloma Support Group



March is Myeloma Awareness Month and the perfect time to highlight a free support group that is open to everybody at Baylor University Medical Center in Dallas. 

Every second Saturday, the North Texas Myeloma Support Group meets at Baylor on the 10th floor of the Sammons Cancer Center from 10:00 a.m. – 1:00 p.m. This group is a wonderful group of men and women that are patients and caregivers; some of whom are 10+ year survivors, some are newly diagnosed, and everywhere in between. The group has speakers who discuss new drug therapies, nutrition, caregiver support, and many other topics specific to their disease.

At a recent meeting, we had a few newcomers to the group, some of whom had recently been diagnosed with multiple myeloma. There is so much information out there to sift through – which doctors specialize in treating myeloma, what treatment to do, what the numbers mean, and how to cope. These patients and caregivers who came to the meeting with a "deer in the headlights" look left  that afternoon with answers to their questions, acknowledgement of their fears, steps to move forward, and a sense of community. We were able to sign them up for the LLS First Connection program and get them plugged in with other resources to help them navigate through their diagnosis.

If you or a loved one have been touched by myeloma, I strongly encourage you to come to one of these groups. 

Blessings,

Kelsey
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Kelsey Thompson is a Patient Advocate for the North Texas Chapter of The Leukemia & Lymphoma Society.  She understands the patient experience as a blood and marrow transplant registered nurse.  She is based at Baylor University Medical Center in the Cvetko Center.  She meets with patients and their families after receiving a blood cancer diagnosis.  

Contact Kelsey:
(214) 818-7890 
Kelsey.Thompson@lls.org

Thursday, July 17, 2014

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

Monday, June 10, 2013

Mission Monday: First Connection Volunteer

Bill Bock with Deputy Executive Director Stacey Russell (left)
and Executive Director Patricia Thomson (right) at the 2013
Volunteer Appreciation Event.

I will always remember the moment when the doctor said "I’m afraid you have AML and it is a very serious form of leukemia". He explained that this disease was highly complex and that his hospital did not even take AML patients. In a blur, we were shuffled off to a larger facility where a new oncologist spent a goodly amount of time with treatment options and ended by saying I needed to be admitted immediately. We left with a whirlwind of terms like chemically induced remission, stem cell transplant, graft vs. host disease and many other barely understood concepts. The whole ordeal was frightening and I wept when I told my children.

The hospital stay was long and emotionally exhausting for my family. In 2005 patients were confined to one floor in an effort to avoid outside infections. I recall praying for simple things like sunshine and a light breeze on my face as I watched runners twelve stories below and wishing I could join them. Upon remission, my transplant nurse said she had found a number of potential donors and that two were considered perfect matches. Furthermore, each agreed to donate. After undergoing a second high level chemotherapy round to prepare my body for the transplant, the actual transplant process was almost anticlimactic.

The roller coaster of emotions eventually came to an end and I was released to begin the healing process.

In subsequent doctor visits I learned of The Leukemia Lymphoma Society (LLS)and their First Connection program and it brought back all those feelings of fear and despair. My wife and I would have loved to speak to a survivor who had experienced all this. I told myself I would get involved so that someday a man just like me would learn that this is not a death sentence and that there can be a positive outcome.

Five years and three more grandchildren later, I was pronounced cured.

Since then I have signed on as a First Connection volunteer for the North Texas Chapter and have made countless calls to newly diagnosed patients of all blood cancers. While attempting to alleviate their fears, I also make them aware of other LLS services that can help with financial, psychological and legal difficulties.


About the First Connection Program:
The Patti Robinson Kaufmann First Connection Program is a free service of LLS that enables patients and their loved ones to connect with a trained peer volunteer who has gone through a similar experience.  The program makes an average of 6,000 first connections each year.

LLS First Connection peer volunteers are in a unique position to provide support and community resource information to others facing a similar cancer diagnosis.  Patients and their family members are matched with peer volunteers.  The match is based on diagnosis, age, gender and other factors that might create a mutual understanding and ease of communication between participants and volunteers.

You can learn more here about how to take advantage of the First Connection Program in North Texas as either a volunteer or recipient.

Friday, May 3, 2013

Mother's Day Profile: Britt Hemsell



Life is perfect! This was my perspective at age 34, married to the man of my dreams, enjoying our beautiful baby boy (22mo.), and praying about having another one. In February of 2004, I went in for a routine physical feeling great having just lost all the baby weight. My doctor visit went well and I was sent on my way with a clean bill of health. Yay! The next day my physician called and expressed some concern that my white count was a bit high at 25,000. It looked like I might be fighting an infection and should start on antibiotics. Little did I know, this was just the beginning of what was yet to come.

A few days later, I was back in my physician’s office getting more blood drawn for more tests. Still taking antibiotics, my white count had increased a little up to 27,000. I still felt fantastic. What could be wrong? She was determined to figure out what was going on. So, after a week worth of testing and more blood drawls, she sent a blood sample for a second opinion, along with doing a few more tests herself. Sitting in my physician’s office for the fourth time in the past 10 days was a bit unsettling. We discussed the results from my tests, all were negative. The second opinion’s results were a different story. I was told that he saw an "abnormality in some of my blood cells", mentioned the word myelodysplasia, and that he would like to see me.

I waited till 5:30p.m. that evening to call, thinking that I would hear back the next day to set an appointment in the next month or so. They called back 10 minutes later to come in that Thursday to visit with a hematologist/oncologist. They had been expecting my call. Chills ran up my spine. Never has a doctor’s office called back and scheduled an appointment so quickly. It was at this point that I realized that whatever was going on with me just might be serious and started researching. Words like myeloproliferative and pre-cancers like myelodysplastic syndromes (MDS) popped up. I don’t even know how to spell this stuff! Ok, whatever this is, surely it’s not cancer. I’m too healthy. I’m too young!

Thursday’s appointment couldn’t come quick enough. I want to know I’m ok and get back to my perfect life. The appointment proved to be anything but. It was confirmed abnormal blood cells present and a high white count. To help figure out what is really going on, a bone marrow biopsy was needed. During my biopsy I finally broke down and realized that this was serious and all really happening. I was scared. A week later it was time for the results. It was this visit, on March 19, 2004, that I learned I have a cancer called Chronic Myeloid Leukemia (CML). Diagnosis date is a date every cancer patient remembers. Thankfully my husband had come with me to share the blow to our lives. I was numb. I needed to start a new type of oral chemotherapy called Gleevec right away, as 100% of my cells tested positive for CML. Before this targeted therapy became available, it was stem cell transplantation and maximum five year prognosis. Getting pregnant was now out of the question due to the impact the chemo would have on the baby. I also needed to see a Bone Marrow Transplant specialist and get typed for a possible stem cell transplant as a backup. What??!! My perfect world had just come crashing down. My life would never be the same.

I started on 400mg Gleevec daily that evening. I am so blessed to have loving family, friends, and church that helped out, as the next three months proved to be physically and mentally challenging. Nausea, fatigue, bone and joint pain, anemia all took their turn as the chemo worked to eradicate the cancer cells from my body. Hungry for information to help make better informed decisions and learn how to adjust, I read and researched, and learned everything I could about CML. This is how I came to learn more about The Leukemia Society (LLS) and what they had to offer. They had the most up-to-date information regarding CML and treatment with Gleevec. The LLS helped fund the research that made Gleevec a reality. I was able to talk and get reassurance from another mom with CML through their First Connection Program. LLS sponsored local support groups for blood cancer patients provided me with a much needed outlet of support, understanding, and encouragement at a level that my family and friends could not provide or understand. Instead, my family and friends were able to rally and support me through the Light the Night campaign.

Fast forward nine years. I’m happy to say, "I’m still alive and thriving!" I thank God, The Leukemia & Lymphoma Society, the researchers, my oncology team, family, and all the wonderful people that helped me get through those tough times, and who continue to support me though the ups and downs of living as a survivor with CML. My now 11 year old son continues to be my biggest source of inspiration and encouragement. He has always helped me be brave since the beginning. As you can imagine, the past nine years have changed my life in profound ways. It is my hope and prayer that a cure will be found in my lifetime. I strive to give back and help others going through the shock of a cancer diagnosis. While I no longer consider my life to be perfect, it’s a new kind of perfect because of the people in it, the richer and deeper relationships, and cherishing each day as a wife, mother, and survivor.

Britt Hemsell
9 yr. CML Survivor

If you would like to take time to honor a mother, like Britt, in your life please consider making a donation to The Leukemia & Lymphoma Society this Mother's Day.

Make a donation online
and a letter of recognition of your gift will be sent to the mother you are honoring with your donation. You are also welcome to mail in a donation to: LLS, Attn: Mother's Day, 8111 LBJ Fwy., Ste 425, Dallas, TX 75251.

Thank you and Happy Mother's Day from the North Texas Chapter of The Leukemia & Lymphoma Society.

Saturday, April 27, 2013

National Volunteer Week: Patient Services

No one is more cherished in this world than someone who lightens the burden of another.  Thank you. 
~Author Unknown
Rhonda Baker (center) with Stacey Russell (left)
and Patricia Thomson (right)
This week is National Volunteer Week and while The Leukemia & Lymphoma Society is thankful for its volunteers year round, we are taking this opportunity to highlight seven outstanding volunteers that help make the North Texas chapter run so efficiently.

For Rhonda Baker, the decision to volunteer for LLS was a no brainer.  She is a Hodgkin's Lymphoma survivor who is passionate about being part of the effort to find a cure for all blood cancers.  Rhonda is involved in just about every aspect of the North Texas Chapter.  She is a long-time participant in Team In Training, Light The Night, a First Connection volunteer, a member of the Speaker's Bureau and a vital volunteer to the Patient Services Program.

For years, Rhonda has come into the office every week for several hours to put together packets to mail to newly diagnosed blood cancer patients.  When a patient is diagnosed and looking for more information about their disease and resources LLS has to offer, they send a form into the LLS office.  It is Rhonda who puts together and mails the information new patients so desperately need to learn more about their diagnosis and treatment options.  Her attention to detail ensures that patients get all of the information they need in a prompt manner.

We are thankful for Rhonda!

Monday, March 18, 2013

Mission Monday: First Connection Program

Would you like to reach out to others
diagnosed with Leukemia, Hodgkin Lymphoma,
Non-Hodgkin Lymphoma, Myeloma or MDS?
The Leukemia & Lymphoma Society’s
First Connection Program
connects patients and their families with individuals who have personally experienced the challenges of dealing with a diagnosis of a blood cancer.
We are currently looking for patients, parents and caregivers who
are at least one year post treatment/acute phase who want to listen
and help newly diagnosed patients understand the road ahead.
If you are interested – our next training session is
Saturday, April 6, 2013
9:30 a.m. to 3:30 p.m.
(lunch will be provided)
All interested persons must complete an application
and a short phone interview.
Space is limited – please call or email to reserve your spot.
We need patients with all blood cancer diagnosis who have been
treated within the past three to five years. We have a particular need for
parents of children with a blood cancer, patients with CLL, MDS and
multiple myeloma and caregivers of all blood cancers.

Contact:
Kim Brown - Patient Services Manager
(972) 996-5905