The Leukemia & Lymphoma Society Blog

The Leukemia & Lymphoma Society Blog

5 Posts tagged with the light_the_night tag

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John Haluck became part of the LLS family almost a decade ago.  He is now a trustee of the Greater Sacramento Area chapter and is not only a survivor but is a huge supporter of LLS.

 

When I was diagnosed with chronic lymphocytic leukemia (CLL) in 2000, I was no stranger to leukemia, having lost a good friend to the disease. Still, going in for a routine physical and finding out I had an "incurable" form of cancer was a massive shock to both me and my family. I looked at my three kids and I wondered if I would be around to see any of them graduate from college or get married. It was the worst weekend of my life.

 

My doctor recommended a "watch and wait" approach, since my form of leukemia was chronic, not acute, and some people have lived twenty years with CLL.

 

However, my cancer progressed much faster than my hematologist could foresee. By 2004, he recommended that I start chemotherapy soon, as the cancerous lymphocytes were increasing in number and could cause a stroke. He told me that there was no hope for a cure and advised me against looking for a clinical trial.

 

By this time, I was volunteering with my local chapter of The Leukemia & Lymphoma Society, chairing and helping organize the annual Light The Night Walk. I also learned about a doctor who has been funded by LLS and does leading edge research in CLL - Michael Keating, MD, at the MD Anderson Cancer Center in Houston. I contacted him and heard back immediately - he would see me as soon as I was ready.

 

The morning after the Light The Night Walk, I boarded a Southwest flight for Houston. After a battery of tests, I waited to see Dr. Keating. In walked this big, burly man (a rugby player, no less) who grabbed my hand and then gave me a big bear-hug. To my surprise, he said, "John, I think that we have a very promising treatment for you!"

 

I called my wife, who flew in, and I started a clinical trial the next day of a new targeted drug, Rituxan®, which was developed with the help of funding from LLS. The rest is history. After four days of therapy, my white cell count had dropped to normal! A week later, the lumpy cancerous lymphocytes had disappeared from my lymph nodes. It was happening just as Dr. Keating had described.

 

Now I've had 53 months in complete remission. I feel a debt of gratitude to Dr. Keating and LLS, whose funding helped make Rituxan a reality. I have my life, and am able to enjoy it. And I have hope!

 

                                                                                 -- John Haluck

 

You can also listen to a short audio clip of John sharing his support of LLS.

 

If you've been diagnosed with a blood cancer, LLS is here for you:
To speak to  an information specialist, call (800) 955-4572, chat online at www.lls.org, or email infocenter@LLS.org.
Find peer support on the Blood Cancer Discussion Boards.  
Support the fight against blood cancers with a tax-deductibe year-end gift to LLS.

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Christen Reilert was diagnosed with non-Hodgkin lymphoma (NHL) when she was just 27-years-old. She took some time out to answer our questions on what it meant for her to be diagnosed with cancer as a young adult, as well as the fertility issues she faced.

 

LLS: How did you find out that you had NHL?

Christen: I found out I had NHL when I started having trouble taking deep breaths. Every time I took a deep breath it hurt which prompted me to go to my doctor. Twice I was misdiagnosed with walking pneumonia, given antibiotics and sent on my way. Two months later the symptoms returned and I ended up going to the hospital where they did a chest x-ray and found a large mass in my chest. That was the 4th of July in 2002 when I was diagnosed with NHL.

 

LLS: That sounds frustrating. Can you describe how you handled the diagnosis, as well as how it affected your day to day life?

Christen: The news was a total shock, being 27-years-old and a two-year newlywed with my husband, Josh. I was devastated. After the shock, I decided I was going to do whatever it took to survive. At the time, I didn't want to know anything about the cancer, I just wanted to fight it. Every day I went in for my chemo treatments I had a smile on my face and I knew at that moment, I was a survivor. I went through six chemo treatments over an 18-week period and 18 days of radiation. I lost all of my hair on my body, got severe thrush*, became extremely fatigued and was out of work for seven months. Since that dreadful day of diagnosis, I look at every day as a gift. Every day I wake up, I thank God for letting me enjoy another day of life. There is nothing in life that be that bad. In my life, there are no bad hair days, no feeling sorry for myself, just living everyday as it comes.

 

LLS: Do you mind sharing if and how your diagnosis affected your plans to have children?

Christen: Just two months prior to my diagnosis, we had just started trying to have a family. I had always dreamed of becoming a mother and when I was told I had cancer, my dreams were shattered and put on hold. There was no definite answer if I'd ever be able to have children. I sought out professional advice from an infertility specialist in Manhattan. Josh and I traveled there by car and she told me I could freeze embryos but I'd have to wait until my next cycle when I ovulated again. Unfortunately my tumor was so aggressive I couldn't postpone chemotherapy and I was not able to freeze any embryos to preserve my fertility. Needless to say, I cried all the way home.

 

LLS: Was there anything you could try at that point?

Christen: My chances of becoming a mother were slim. I took a chance and the doctor put me on a birth control pill to suppress my period for the duration of chemo (which was 18 weeks as well as 18 days of radiation) in hopes the chemo would bypass my reproductive system. The chemo I endured was very aggressive and harsh, and basically prayer and hope was all that was going to ensure any sort of fertility.

 

I was very ecstatic when I found out I was pregnant in April of 2008. When I took that pregnancy test, I literally did a double take. All the prior tests were always negative and to get a positive result was just shocking. When the doctor confirmed my pregnancy with a blood test I didn't waste any time breaking the news to family and friends!

 

LLS: Congratulations!

Christen: Yes, on December 23rd, 2008, our miracle baby born. Our son, Jaden was born! My motto which I've been saying since I found out I was pregnant has been "CANCER SURVIVOR'S HAVE MIRACLES TOO". We are so blessed to have him. What more could a cancer survivor ask for?

 

LLS: How is your health now?

Christen: I am currently in remission and have been cancer free for the last seven years now.

 

LLS: We hear that you’re actively involved with The Leukemia & Lymphoma Society (LLS).

Christen: After I completed radiation in early 2003, I ended up calling LLS to become involved in fundraising because felt like I owed the world a big fat thanks! For everyone who helped me beat this disease, I felt like I had to give something back. So in 2003 I started doing the Light The Night Walk and formed my own team, Christy's "Cure"ators. I have been the team captain for the last six years and an honored patient hero for the last five years. Everyone who walks with Light The Night Walk has been following my story. Last year at Citibank Park I was speaking (as I do every year) and was able to announce my pregnancy. I unveiled my seven month pregnant belly in front of hundreds of people with a zip of my jacket and the crowd roared for me. It was so exhilarating. This year, I get to introduce my son Jaden to everyone at Citibank Park, I can't wait.

 

In addition to being a team captain and honored patient hero I also volunteer my time anywhere I can. I am also a First Connection Volunteer for those who are diagnosed with similar diagnosis and who are around my age - I am like a mentor to them.

 

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* ”Some people may develop a white, shiny coating or white patches on their tongue, inside of the cheeks or on the floor of the mouth. This symptom may indicate a yeast infection, also called ‘thrush’ or ‘oral candidiasis.’” From the free booklet, Understanding Drug Therapy and Managing Side Effects.

 

If you’re a young adult who has been diagnosed with blood cancer, you can give our Information Resource Center a call at (800) 955-4572 and someone will be able to help you or point you in the right direction.

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Lonny & Holly

 

Like many brides, Holly Jukiewicz is looking forward to her wedding this June where she will marry the love of her life, Lonny Warner. They met online just over two years ago, and decided to meet in person just a month later. That same week they both realized that this was the relationship that they had been looking for, and decided that they were not interested in dating anyone else. That September, Holly accepted Lonny’s proposal through happy tears.

 

A few months ago, Holly received an email from a co-worker asking for support for her daughter’s participation in The Leukemia & Lymphoma Society’s (LLS) Light The Night Walk. Holly didn’t hesitate to donate because she was touched by the young girl’s involvement in Light The Night.

 

There's another reason Holly was moved to donate. When her fiancé Lonny was just a few months old he was diagnosed with leukemia and he was is treatment for the next several years. His entire family was affected. His brothers often had to stay with other family members while their parents and Lonny were away at the hospital. And Lonny has memories of the dreaded trip over the George Washington Bridge into New York City -- that was the route they took when he had to go for treatment. The family was determined to get Lonny into remission, and he beat the leukemia.

 

Holly has supported Light The Night in the past. But this time she and Lonny decided that it would be fitting to share their gift with their wedding guests by having LLS-themed place cards. Holly told her co-worker, “If this can help any other person or little kid avoid going through what Lonny and his family went through --and still have memories of --then it is time and money well spent.”

 

It’s clear that Holly has nothing but praise and love for her future husband and his family. “I thank God every day that he and his family were so strong to get through this illness when he was so very young. I am so blessed to be part of his family and my family feels the same way about all of them as I do.”

 

Learn more about Light The Night by visiting www.lightthenight.org or reading @LLS.

 

Find out more about childhood blood cancers by visiting the main LLS website or by calling our Information Resource Center at (800) 955-4572.

 

 

Show your Valentine you have heart - make a donation to LLS in Honor of your sweetheart and support life-saving cancer research.

 

 

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As with every year at The Leukemia & Lymphoma Society (LLS), our staff and volunteers work hard to provide the highest quality services and events as possible, as well as to advocate on behalf of blood cancer patients and fund critical research.

 

Here are some interesting highlights from 2008 to remind you of what we've worked to accomplish:

  • Our Patient Services group did it again by offering more than 20 free telephone education programs to patients, caregivers, and medical professionals around the globe. These programs featured expert speakers who talked about topics ranging from Advocating for Your Child's Learning Needs: Through Treatment and Beyond to Tomorrow's Therapies Today: Clinical Trials for Leukemia, Lymphoma & Myeloma. Find out what free programs are available for registration now by going to the National Education Programs web page now.

  • Speaking of clinical trials, LLS now supports a free clinical trial service that enables blood cancer patients to find clinical trials more easily. Patients can also call the Information Resource Center at (800) 955-4572 if they need assistance while using the system. Learn more about TrialCheck® at our website today.

  • Our local chapters have been hard at work in the communities they serve. The Chapter Education Programs reached 48,000 patients and caregivers in 2008. Our Family Support Groups, also a community-based program, reached 12,000 participants in 2008. Find out more about this program.

  • Aside from launching The Leukemia & Lymphoma Society Blog (this blog that you're reading right now), we also launched The Light The Night Walk Blog. Read about inspiring people and fundraising successes there.

  • LLS now offers more than 50 different up-to-date free booklets, fact sheets and brochures on blood cancer, treatment and support topics. Most are available in Spanish, as well. Browse our Free Materials section and download or order your free copies today.

  • LLS awarded a new Marshall A. Lichtman Specialized Center of Research (SCOR) grant to Beverly Mitchell, M.D., George E. Becker Professor of Medicine at Stanford University. She and her team will receive $1.25 million a year for five years, for a total of $6.25 million. Learn more about this award, and what Dr. Mitchell and her team are researching.

 

There's so much more that we've done over the last year (lots of events, new booklets and fact sheets, not to mention, introduce our new president and CEO, John Walter), and we're still going strong even as the year is coming to a close.

 

As we look to 2009, we realize that there's so much that we still need to be doing in the fight against blood cancers, but we can't do it without the support of our donors. We know that so many of you receive countless requests from other charities and non-profits at this time of year, but if you have been personally affected by a blood cancer then you understand the value of what The Leukemia & Lymphoma Society offers. Your secure tax-deductible online donation will help us to be able to continue to offer the services and events that are critically needed by patients, caregivers and survivors in 2009.

 

Every little bit helps. Donate to LLS today.

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The Leukemia & Lymphoma Society (LLS) is an extraordinarily busy non-profit. We’ve got patient programs, research funding initiatives, advocacy programs and so many events that it’s hard to decide which one (or ones) to participate in. Even for someone who works here, it’s hard to fully comprehend the breadth of work that we do on behalf of our mission to fight blood cancers.

 

We just posted our most recent video that gives the public a chance to see and listen to staff, including our CEO, John Walter, talk about what we’re doing in the fight against blood cancers. It's 10 minutes long and well worth the watch.

 

 

Also check out our great mission video that features real blood cancer patients and/or their families.

 

Share your thoughts in a comment below – did you learn something new about LLS through these videos?

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