Meet Makenna: Links Fore Leukemia Honored Hero

The Links Fore Leukemia Golf Tournament presented by Venari Resources is a day of great golf, competition and camaraderie.  Most importantly, the tournament exists to help fund The Leukemia & Lymphoma Society's relentless drive to find cures for blood cancers.

Ten-year-old Makenna has agreed to serve as the 2017 Honored Hero.  She was diagnosed with acute lymphoblastic leukemia (ALL) just days before her 8th birthday.  Doctors quickly learned she had a mutation that made her leukemia more difficult to treat.  She faced 10 different types of chemotherapy, 25 spinal taps, and countless needle pokes.  After 10 months of intense chemotherapy treatment, she is in remission!  Although she continues to receive monthly maintenance chemo through her port, as well as daily chemo pills at home, she is thankful to be back in school and participating in the activities that she loves.

Since her diagnosis, Makenna has embraced her diagnosis and the opportunity to educate other children about leukemia and why it's important to fund research.  As Makenna likes to say, she looks forward to a time when "they can give you a shot to prevent leukemia from ever happening!"
We are inspired by her strong spirit and fierce determination not to let her leukemia diagnosis stop her from enjoying childhood.

Three Ways to Get Involved:
Inspired by Makenna's story to get involved?  Here are three ways you can get involved with the tournament today:
1. Register yourself and your foursome to play in the tournament.
2. Purchase a group of golf balls for the Helicopter Ball Drop presented by Elbit Systems of America
3. Share this post with somebody who would be interested in golfing with us.

Save the Date:
Monday, June 26th
TPC Four Seasons Las Colinas
www.linksforeleukemiadallas.org

#TNTBECAUSE - Meet Chris & Cheryl

Here is our fourth in a series of posts leading up to the BMW Dallas Marathon. Today we are interviewing Chris & Cheryl Berg.  The Berg's have been involved with LLS since 2008 when their son was diagnosed with Acute Lymphocytic Leukemia (ALL). Read on to hear why they are doing the Dallas Marathon.

1. What made you decide to run the BMW Dallas Marathon?

North Texas is our home and we enjoy running and training in the fall in order to take part in the BMW Dallas Marathon.  This will be Cheryl's 8th marathon and it will be Chris' 7th with TNT.

2. What does it mean to you that the BMW Dallas Marathon has been named a national event for Team In Training?

We are Texas proud!  There is nothing better to see than the sea of Team In Training participants in purple running in Dallas and hearing "Go Team" echo through the downtown buildings. We look forward to seeing all the TNT participants from across the nation joining together for the same cause.

3. What got you involved with Team In Training?
Our son James was diagnosed with ALL in April of 2008, just prior to his 5th birthday.  After a year of intensive treatment and many hospital stays, his health stabilized.  At that point, we wanted to do more to make sure no child would ever have to go through what James had to endure. This year marks James 5th year from being done with the chemo treatment that lasted 3 1/2 years.  James is our hero and our motivation to come back year after year.

4. Finish this sentence, I do “TNTBecause…”
Because if we don't who will.

5. Tell us about the team you’ve formed to run the relay with.
We have not done the relay but the two of us are a team.  Together we have had sleepless nights worrying about James, stressed about how to make all of the right decisions about his treatment and struggled wondering if there will be another shoe that is waiting to drop with his health.  Together we plow through the 26.2 miles each year hoping and praying the efforts of Team in Training members and great researchers make more discoveries to help the next James Berg.

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Did you know?

• BMW Dallas Marathon is the longest running race in the state of Texas
• More than 40 different bands are on the course for your entertainment
• Stay 2 nights at the TNT hotel and you can skip expo lines and have your packet waiting in your hotel room!
• Earn Awesome Fundraising Incentives

Join the Dallas Marathon TNT Team or join the 5 Person Relay!  150 people have already taken the challenge.  Contact Mariel Bongiovanni for more details. 

www.teamintraining.org/ntx

Meet Kamryn: Fort Worth Light The Night Honored Hero

 Kamryn was a fourteen year old, straight-A student and competitive cheerleader when she went to see the doctor because of mono-like symptoms.  Three days later, after several blood tests, doctors returned with a diagnosis of biphenotypic leukemia: a rare leukemia where both AML & ALL cells are present.  Please read on to hear Kamryn tell her story in her own words.  Kamryn is serving as our Honored Hero for the Fort Worth Light The Night Walk.

“I was diagnosed with Biphenotypic Acute Leukemia in November of 2014. I was a very healthy, active, and normal 14 year old girl before my diagnosis. I had just started my freshman year as a straight A student at Aledo High School. My whole life was cheerleading, school, and homework.  Around Thanksgiving, I went to the Doctor for mono like symptoms. I was feeling rundown, achy, and very  fatigued. They did blood work and on Monday afternoon my mom got a call from the doctor asking me to come to Cook Children’s Hospital. The next morning I went to the hospital and got the news that I had Leukemia.  I barely knew anything about what cancer was and had never met anyone battling it. My life was completely flipped upside down with no warning.

I was admitted to the hospital immediately and had a port surgically inserted to my chest along with a bone marrow biopsy and lumbar puncture the next morning. I began chemotherapy for ALL (Acute Lymphoblastic Leukemia) that night. I was in and out of the hospital for the next 6 months.  The treatment for AML is very aggressive and they hit it hard and fast for a total of 4 rounds of chemotherapy. I became very sick very fast.  After each round, it would take my immune system longer and longer to bounce back and as soon as it was safe, they would hit it again. The first round I was in the hospital for 40 straight days, spending Thanksgiving, Christmas, and New Year's there.
Losing my hair was a very hard thing for me to deal with. While my friends were at Cowboys Stadium cheering on the Aledo Football Team to another State Championship, I was making the difficult decision to shave the remaining hair I had left.

Besides the 4 more rounds of chemo that I had to endure, I also developed Colitis which ended up with me having a feeding tube inserted surgically into my stomach. Then I suffered a life-threatening fungal infection due to my weakened immune system. This was in my calf muscle which led to a surgery where they took about 30% of my calf muscle.

It was a long, scary 9 months but my life is finally getting back to normal. I’m cancer free!  I’m tumbling again and back to focusing on school.   If it weren’t for the genetic testing advancements in the last couple of years, I would still be undergoing treatment for ALL. The chemo damaged my body and left me with “chemo brain”, a  fogginess that takes a while to go away. Gentler methods to treat cancer are needed now."

*****

Kamryn celebrated her 16th birthday and a year in remission. She has returned to cheerleading, is a Junior at Aledo High School and is now part of the Youth Advisory Counsel at Cook Children’s. Stories like Kamryn’s are far too common and her story could have ended very differently had she not received genetic testing to determine a better treatment plan.  Advancements such as these are crucial in the hunt for cures. Your participation in the Light The Night Walk and your commitment to raise funds on behalf of LLS plays a vital role in allowing LLS to continue investing in promising research.

Honored Hero Run: A Hero Has a Heart

"A Hero Has a Heart" is the theme of the 2015 Honored Hero Run to benefit the North Texas Chapter of The Leukemia & Lymphoma Society (LLS).  The girl behind the theme, 10-year-old Katie Grace, knows firsthand that it takes heart to beat a blood cancer diagnosis.  She was diagnosed with B-cell Acute Lymphoblastic Leukemia (ALL) while she was in fifth grade.

After diagnosis Katie's doctors laid out a plan that involved a month of chemotherapy with the goal of getting her into remission after 30 days, to be followed by 2.5 years of maintenance treatments.  When she failed to respond as doctors had anticipated, she was placed in the "very high risk" category.  This classification meant higher doses of chemo, radiation and a bone marrow transplant.  Katie's family was devastated.

One month later the news improved.  After more than a month on this physically and emotionally trying treatment plan, doctors declared Katie was in remission and she could move forward with a bone marrow transplant.  Luckily for her, a donor already on the bone marrow registry was a 100% match and she was able to have her transplant with no delay.  Katie's family is thankful for her health as she continues to grow stronger every day and her body continues to respond favorably to the bone marrow transplant.

When the Honored Hero Run Board of Directors saw her entry for the 2015 t-shirt competition, they knew they had found their winner.  Her creation (shown at the bottom of this post) will be featured on all of the participant and volunteer race shirts as well as on the official Honored Hero Run website.

The Honored Hero Run is only eight days away but there is still time to register.  The money raised from this race will be used to help improve the quality of treatment that young patients, like Katie, receive after a blood cancer diagnosis.

Light The Night Honored Hero: RJ Ross

In North Texas, we treasure our incredible Honored Heroes.  An Honored Hero is a person currently in treatment for a blood cancer or a survivor who supports The Leukemia & Lymphoma Society (LLS) in a number of different ways.  Our Honored Heroes participate in events, speak on our behalf to raise awareness, fundraise, etc.  Most importantly, our Honored Heroes remind us of why we work so hard to find cures for blood cancers.

Today we are thrilled to introduce you to Reginald "RJ" Ross, the 2014 Dallas Light The Night Walk Honored Hero.   Read below to learn why we believe RJ makes the perfect Honored Hero.

Reginald "RJ" Ross was diagnosed with high risk acute lymphoblastic leukemia (ALL) on March 9, 2013 after being seen for a nagging cough and night sweats. He had also been experiencing fevers and ear infections over a few months to which his parents and doctor thought were related to daycare exposure and cold and flu season. Being in the doctor's office every other week was becoming the norm. 

One Saturday morning, his mother felt a sudden urge to have him seen by his pediatrician instead of waiting until the following Monday. A pediatrician examined him that day and noticed his skin looked pale and that his liver felt distended and enlarged. The physician urged them to go to the emergency room immediately with congestive heart failure being a possible concern. The preliminary diagnosis came back and was a shock.  He was admitted to the ICU with a dangerously low hemoglobin count, began getting oxygen, blood transfusions, and started chemotherapy a couple days later. 

From that point on, RJ began his journey to get in front of his illness and keep it behind him for good. His first hospital stay was scary for him due to the strange faces and constant needle pricks, but with lots of prayer and family at his side, the experience became a bit more bearable each day. He responded to treatment immediately with no signs of leukemia in his blood the first week and little to no side effects from the drugs. After eight days between ICU and the oncology floors, RJ was released from the hospital and began to show an amazing amount of energy not seen in months. Three weeks later, his parents received the call that his bone marrow test results were back and he was in "complete remission" with absolutely no leukemia (0.00%) detectable in his blood or spinal fluid. This was a hallelujah moment and the news strengthened his family's faith even more. 

RJ's parents believe God's healing power and great care from doctors and nurses at Children's Hospital in Dallas have proved miraculous thus far. RJ has quickly become a favorite with all of the oncology staff. The showering of support from such a large magnitude of family, friends & even strangers world wide has kept his parents in great spirits. Their faith in God continues to get them through these life-altering times. 

RJ's parents describe him as strong, smart, energetic, and so full of life that his spirit is simply contagious - like his full personality has finally been set free. He loves singing, animals, toys, reading books, playing on his iPad, and soaking up sunshine whenever possible. Being in his presence and watching him overcome his circumstances has been inspiring to many. He still has many weeks & months of treatment ahead but with much prayer there is much power and this family is determined to tap into that power at all times.

Register today for the 2014 Light The Night Walk.

Mission Monday: Texas Researcher Wins Major LLS Grant

The Leukemia & Lymphoma Society (LLS) today announced it has awarded four new grants through its prestigious Marshall A. Lichtman Specialized Center of Research (SCOR) research initiative, bringing the program's total funding to $285 million since its inception in 2000.

Helen E. Heslop, MD, at Baylor College of Medicine in Houston, TX is one of four recipients of this grant. Heslop and her team of 11 colleagues at Baylor College of Medicine, Houston, will expand upon previous success in mobilizing the immune system to control blood cancers by attempting to define safer, simpler, and more effective immunotherapies for the treatment of acute lymphoblastic leukemia (ALL) and multiple myeloma (MM). They will investigate if naturally occurring "off the shelf" cytotoxic T lymphocytes (CTLs), also known as killer T cells, can be as effective under some circumstances as engineered T cells against lymphoma. In addition, they will devise ways to augment the effectiveness of CTLs in MM and optimize strategies to isolate and expand CTLs against ALL. This research is significant because immunotherapies may produce better responses in patients compared with existing therapies. Beyond that, there is a need to reduce the complexity and cost in order to make such therapy accessible to more patients. 

The innovative SCOR program funds teams of researchers representing different disciplines and engaged in collaborative efforts to discover new approaches to treat patients with blood cancers. Each team will each receive $1.25 million a year for five years, for a total of $6.25 million. 

Mission Monday: Meet an LLS-funded Researcher in Texas

Kala Kamdar, M.D.

The Leukemia & Lymphoma Society (LLS) spends millions of dollars every year supporting the work of the best and brightest blood cancer researchers around the world.

Today we introduce you to Kala Kamdar, M.D. from Baylor College of Medicine in Houston.  Dr. Kamdar's work has been sponsored by LLS since 2011. Her focus has been on acute lymphoblastic leukemia (ALL) and the long term effects of current cancer treatments.  Below she describes her current project that is showing great promise.

"Acute lymphoblastic leukemia (ALL) is the most common cancer in childhood. Remarkable advances in therapy have resulted in a cure rate of approximately 80%. However, many long-term survivors of childhood ALL face chronic health problems related to exposure to chemotherapy and radiation at a young age. Specifically, long-term survivors of ALL are at an increased risk for excessive weight gain and heart disease, compared to the general population. It is not clear why some long-term survivors of childhood ALL are at a higher risk for obesity than other survivors who received the same treatment. Genetic differences may explain why some children respond differently to certain treatments than others, both in terms of effectiveness and side effects of therapy. We propose that some children may have genetic susceptibility to obesity after receiving chemotherapy and cranial irradiation for ALL. We will examine the role of genetic variation in the development of treatment-related obesity in 1,200 long-term survivors of childhood ALL enrolled in the Childhood Cancer Survivor Study. We will investigate whether differences in the genetic make-up of these survivors can predict why some children develop overweight/obesity (BMI 25) after ALL treatment whereas others do not. We will also evaluate whether gender, age, and ALL treatment differences influence the relationship between genetics and obesity. Our findings from this first study will be validated in an independent study of 400 ALL survivors who are followed at Texas Children’s Hospital. If we can identify which children with ALL are at risk for excessive weight gain based on genetics, we may develop early interventions to prevent this important side effect of therapy and optimize the lifelong health of these children."

Honored Hero Bennett

It has been more than a year since Keith and Kirsa’s son, Bennett, was diagnosed with Acute Lymphoblastic Leukemia (ALL). Bennett is now 2 years old, but at the time of his diagnosis he was only 13 months.  Because Bennett’s type of leukemia was considered high-risk, the first 10 months of his chemotherapy treatment were extremely intense. In addition to chemotherapy, he has received 16 blood transfusions, as well as numerous spinal taps and bone marrow tests. Through it all, he has remained a courageous, strong, and resilient little boy, who has learned to walk and talk, all while fighting cancer.

Thankfully, Bennett is in remission, but has 2 more years of daily chemotherapy left to keep the cancer from coming back.

The Williams Family is so grateful for the research that has been done, and the advances in blood cancer treatment, that have been backed by the Leukemia & Lymphoma Society. LLS plays a huge part in Bennett’s success thus far.

Thank you for participating in this year's/season's Team in Training program. Your tireless efforts DO make a difference in the lives of patients just like Bennett and so many more. Without you, the road to a cure would be that much longer. Thank you for your commitment to this life-saving cause. We hope you have an amazing adventure as you train, make new friends, grow in your athletic capability and achieve your goal.  We are here to help you from the couch to the finish line or take your endurance training to the next level…so keep us in the loop. Let us know how you are doing, what obstacles you may be working to overcome and let us help you make it all the way to the finish line!