As a passionate supporter of The Leukemia & Lymphoma Society (LLS), I would like to share with you the story of this year's Girl of the Year for LLS's Man & Woman of the Year campaign in Miami. I hope you will find it as inspirational as I did.
Kiarrah-Dashe' was diagnosed with Acute Lymphoblastic Leukemia (ALL) on May 19, 2011 when she was just 4 years old. KD was getting fevers and suffering from exhaustion, I knew something was wrong when she started taking naps and brought her to the hospital. In the ER they found nothing, so I followed up with her pediatrician. She didn't see anything out of the ordinary but ran blood tests anyway. Later that night her pediatrician called and told me to take her directly to the ER. When I got to the hospital more tests were run and after hours of waiting it was finally confirmed. KD had leukemia. While the worst part about the entire ordeal was finding out, the four week hospital stay and weekly doctor visits was no "walk in the park" However, it's a small price to pay when you can hold your child every day. The doctors and nurses at Holtz Children's Hospital are the best. They made the whole experience bearable by treating KD like a normal kid. As KD says, "she just has bugs in her blood." KD was back to herself in just 3 weeks, talking a mile a minute and acting like she had ants in her pants. Throughout this entire life-changing event we kept telling ourselves that it could have been worse. She is an amazing strong little girl that has taught us all to always remain positive. Tyrashiana, KD's Mom Many of you have your own stories or have been moved to support LLS by someone like KD. One of LLS's oldest fundraising programs is our neighbor to neighbor campaign. People share their stories with friends and neighbors and ask them to support the cause. If you'd like to participate in the neighbor to neighbor campaign this year, it would be greatly appreciated. Nothing is more powerful than a friend asking a friend to support the cause that is dear to them. Please fill out this form and a neighborhood campaign kit will be mailed to you. Wishing you the best of health, John E. WalterPresident & CEO, The Leukemia & Lymphoma Society
I hope you and your family had a wonderful Thanksgiving holiday. In our home, it is a time of great company, abundant food and reflection, for we have much to give thanks for. I want to thank you for the support you've provided The Leukemia & Lymphoma Society (LLS) this past year. You made it possible for LLS to provide supportive services, advocate for life-saving treatments and fund the most promising blood cancer research anywhere. Our investments in blood cancer research, from basic molecular studies, to translational research that moves promising work from the "bench to bedside" and collaborative projects that encourage work among researchers, are moving us toward our vision: a world without blood cancers. We are grateful for your past contributions and welcome your support now more than ever. Why now? We have started a list -- 12 reasons for you to support LLS in 2012:
1. Ease the fears and give hope to newly diagnosed patients by linking them with others who have been through the same diagnosis or treatment.
2. Extend remissions with a new immunotherapy for CLL patients for whom standard chemotherapies do not work.
3. Predict and prevent serious bone damage that can occur after lymphoid cancer patients receive high steroid doses. A clinical trial is already testing one prevention strategy in young ALL patients.
4. Advocate on behalf of blood cancer patients to ensure that oral anti-cancer medications are covered under the same "medical benefit" provision as injected drugs rather than the less generous "pharmacy benefit."
5. Complete a Phase III clinical trial initiated by Onconova Therapeutics, Inc. that could lead to the FDA-approval of a new targeted drug for patients with myelodysplastic syndromes.
6. Continue investing in partnerships with commercial enterprises to move promising new therapies more quickly toward F.D.A. approval such as one currently being tested by Acetylon Pharmaceuticals for myeloma patients.
7. Develop state-of-the-art tests that measure the activities of various blood cancers, so that new therapies can be identified for patients with difficulty in responding to standard treatments.
8. Advance clinical testing for a new drug that inhibits a molecule involved in certain aggressive lymphomas as well as leukemias that are particularly difficult to cure.
9. Sustain an alliance with Epizyme and the development of a new targeted drug for patients with mixed lineage leukemia (MLL) against which today's standard therapies are largely ineffective.
10. Provide the most current, comprehensive disease information and treatment options to North Americans who receive the alarming news of a blood cancer diagnosis.
11. Ensure co-payment and financial assistance to patients who would be forced to choose between expensive treatments and essential needs when health insurance doesn't cover their therapies.
12. Partner on a clinical trial that advances a drug for B-cell leukemia and lymphoma patients that was originally developed for arthritis patients.
But this is just a start. Please donate today and share your reasons to give with the LLS community. Whether you are passionate about developing more, less toxic treatments that improve the quality of life for patients, or providing financial assistance that helps ease the burden during these tough economic times, your support will give help and hope to patients and their families.
Thank you for your generosity, John E. WalterPresident & CEO, The Leukemia & Lymphoma Society
Your children can usually tell when something is bothering you. As a parent, you want to protect your children-- but for them, sensing that something is wrong and not being able to talk to you about it, often causes a great deal of fear and worry. Talking to your children at a level that is right for their ages and personalities can help make both you and your children feel a greater sense of control during this difficult time. Have faith in your children’s ability to handle the news. Being truthful with your children will give them a better understanding of what you're going through and will give them the opportunity to share their feelings and concerns.
Some factors you may want to consider to help you talk with your child about your cancer are:
Talk it out. No matter how much you prepare for the conversation, you may still have questions. If you're having trouble deciding how or if to tell your children, your healthcare team may be able to give you advice. You can also contact The Leukemia & Lymphoma Society (LLS) chapter in your area or an LLS Information Specialist (800-955-4572). Visit the LLS Blood Cancer Discussion Boards to speak with other parents. In addition visit www.lls.org to review our vast information for patients and caregivers, and contact national and local offices for additional support.
Have you ever considered asking the tooth fairy for a donation? That's exactly what Audry Liles did while participating in The Leukemia & Lymphoma Society's School & Youth Program.- Pennies for Patients. When I heard about this, it reminded me just how powerful children can be. I'm enclosing the note sent to us from Jennifer Liles, Audrey's Mom.
This is the 2nd year my daughter has participated in 'Pennies for Patients' at her elementary school, Piney Point Elementary School, Tall Timbers, MD. Today she brought home the information and emptied her piggy bank to fill up the box for the LLS program. My daughter just turned seven and is in the 1st grade.
After dinner she asked me for a blank piece of paper to write a letter the tooth fairy and asked me not to look. When she got done this is what she had written:
(I have not edited grammar or spelling)
Dear tooth fairy we are having a thing at school called Make change beat cancer. We have to send money to the school and donate to other people that don't have the money to buy the medicine for there sick kids. So I was thinking you could come to my house tonight and leave me money so I can bring it to school. Love, Audrey Liles
This made my heart melt and I really felt the need to share it with you.
Thank you, Jennifer Likes (Audrey's Mom). We're always amazed at the impact children are making on the lives of patients with cancer. This year alone, more than 15 million students raised $26 million through our School & Youth Programs to help beat cancer. We are grateful for people like Audrey, her mom Jennifer, and for all tooth fairies. Your support makes a difference. For more information about LLS's vital work, visit www.lls.org.
Today, we're sharing a story from Stacy who not only had to deal with the loss of her job last year, but was also diagnosed with Hodgkin lymphoma.
2009 was not my year to say the least. First I got laid off from my job in banking. I am single and do not have children so my career was a large part of my life and my identity. In order to deal with the situation, I decided I was going to turn it into a positive experience and use the time to do all the things I never had time for before. I joined a running group and ran my first race, volunteered at an arts and crafts program for homeless children, attended yoga class regularly, traveled a little and took my dog for walks in the park daily. I had finally stopped to smell the roses.
A few months later I found a lump in my neck. Although I thought it was probably nothing, I had a nagging feeling that I should go to the doctor. I did go and that was the day my life changed forever - I was diagnosed with advanced stage Hodgkin lymphoma that had been found in eight lymph nodes throughout my body. My treatment was six months of chemotherapy and my prognosis was 50/50. I was numb and in a fog yet my mind was racing with questions like "Do they make chemo that doesn't make your hair fall out?" and "How much time do I have left?"
I have a wonderful supportive family and friends but I felt as if no one really understood what I was going through. A social worker at Massachusetts General Hospital recommended The Leukemia & Lymphoma Society's Patti Robinson Kaufmann First Connection Program. Through conversations with my First Connection volunteer we learned that not only did we have the same name, but our moms have the same name also. We are only a few years apart in age and she was diagnosed at the same age as I was. She is at the same career level, lives alone, is a dog owner, loves flowers and gardening, has long dark hair, and even went to high school with my cousin. We had so much in common that I felt as if I had known her for a lifetime. This person who is so much like me had gone through the same experience and made it through. She became my inspiration.
I am pleased to say this story does have a happy ending. In January I found out that I am in remission, in May I started a new job and in June I traveled to Ohio and got to meet my peer connection!
When I think back on the last few months and 2009, I would hope that anyone going through an experience like mine remembers to live every minute with every ounce of his or her being. They may feel that they can't get through this, but they will surprise themselves when they find out that they do have the strength inside to fight the toughest battle of their life. And when they win, life will be sweeter and more precious than they ever thought it could be. Your support makes a difference. For more information about LLS's vital work, visit www.LLS.org.
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