Meet the Doctor: Naveen Pemmaraju

Receiving the news you have cancer is one of the most frightening things a person can hear. And when that happens, you want to go somewhere you know you'll receive the best treatments and see a physician who is an expert in your exact malignancy.

We are fortunate here in the Texas Gulf Coast chapter of the LLS that we get to meet and interact with some of the greatest cancer doctors on the planet in the Texas Medical Center, those who are leading the way to bringing us to the end of blood cancer.

Meet Dr. Pemmaraju:

Naveen Pemmaraju, M.D. is an assistant professor in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. His energy and enthusiasm are evident as he works tirelessly to kill the cancer in his patients and continue studying causes and better treatment options so that future generations will not have to suffer through acute leukemia.

Dr. Pemmaraju grew up in Hot Springs, Arkansas. He went to college at Tulane in New Orleans before returning to his home state to attend University of Arkansas for Medical Sciences. He did his residency at Johns Hopkins in Baltimore and finally in  2008, he came to MD Anderson in Houston for his fellowship in hematology and oncology.

"I knew I wanted to be a hematologist/oncologist since I was in late high school/early college," he said, "it was a calling for me to seek leukemia." He learned much from his dad who is a pathologist as well as several mentors at Johns Hopkins and MD Anderson. Their passion for the eradication of these diseases represented how he wanted to approach patients and research.

"I really love engaging in patient-oriented clinical investigation and clinical research," he said, "I focus my time on research: patients with AML, MPNs and a rare hematologic malignancy known as Blastic Plasmacytoid Dendritic cell neoplasm. I'm also very interested in research involving adolescent and young adults with myeloid malignancies."

Curing blood cancers is at the top of the list of Dr. Pemmaraju's priorities. "A lot of people don't realize there are as of yet no standard therapies available for a lot of my patients," he said, "there are just no widely available approved therapies for these subgroups and there is urgent need. I see patients every day that need access to these kinds of therapies." About his fellow physicians, he says, "we come to work every day not only to take care of patients, but to find therapies and cures for our patients."

And in recent years, he has seen quite a few breakthroughs. For example, in his area of work, the pioneering of Ruxolitinib, the first approved JAK inhibitor in treatment of higher risk Myelofibrosis was led by his group with Dr. Verstovsek and Dr. Kantarjian. "I have observed the benefits of this drug in the clinic myself and this is very satisfying when previously these lovely patients didn't have any therapies available." He is also excited about the development of targeted therapies which target cancer cells while leaving normal, healthy cells unharmed.

"I think oncology is a special way of life with many rough days for the patient and the provider," he said, "It's not just a career. For me it's a way of life, a calling, a permanent state of being. I laugh with my patients, I cry sometimes with them, I hold hands, I have learned how to deliver bad news to a patient with a room full of relatives, and I have had days of pure joy shared with my patients' smiles at bedside on the day we find out about a remission." He sees many postives and negatives every day. "My goal is to be there, in the moment with my patient through every step of their cancer journey."

One of the ways he deals with the challenges of this calling is through writing about his patient encounters and experiences. He has even had the chance to publish some of his poems and essays. "It's a great way for me to communicate my unique thoughts and experiences at life's most harrowing situations of health, death and dying that I'm witness to on a daily basis."

And Dr. Pemmaraju says he could never fulfill his calling as an oncologist without the support of his wife Aditi. "Without her, my dedication to my patients and my research would be impossible," he said, "She is my sounding board, my comfort zone, my partner, my best friend. She keeps me sailing through uncertain waters of what I do day in and day out." He says that she and his two young children keep him grounded and balanced so he can get up each day and treat his patients.

We are incredibly grateful to Dr. Pemmaraju and all of the amazing blood cancer doctors for their dedication to wiping out these diseases. Someday, thanks to their efforts, there will be no more blood cancer. They truly are making someday today.

Mission Moment Monday: Barry's Story

Barry at the 2009 Light The Night Walk at Market Street

"Welcome to MD Anderson Cancer Center" was the sign Barry Blanton noticed that April day in 2003. It wasn't welcoming him as a visitor there to see a friend with cancer. It was welcoming him as a patient with a cancer that he was told was "treatable, but not curable".

Barry was a healthy, strong man in his 40s when he discovered he had stage four follicular non-Hodgkin lymphoma. The cancer had spread to his bone marrow and he had to endure six months of chemotherapy to kill it. Fortunately the treatments did not make him extremely sick and by January 2004, he finished chemo.

Throughout his cancer journey, Barry's faith was strong. "I knew, and still know, that God has a plan for my life and for my having gone through this challenging time," Barry said, "It was a huge faith opportunity for my life."

His own battle against blood cancer was a challenge, but not as difficult as that of seeing his father endure it. Just 2 1/2 years after Barry finished treatments, his dad was diagnosed with myelodysplastic syndrome, a blood disorder that later becomes leukemia. His dad's disease quickly advanced and became acute myelogenous leukemia (AML) and after trying three different regimens, they were told there was nothing more they could do. His dad, Don Blanton, died after only 10 months.

Barry, his wife Fran, his mom Barbara, as well as many of their friends and family have taken their grief and painful experiences fighting blood cancer and used them for good. Their Light the Night team, The Blanton Bunch, has been part of Montgomery County, Texas LTN walk since it began 10 years ago. They have raised over $115,000 and this year their goal is to raise another $22,000.

The Blantons continue to fight the good fight with the hope that someday these diseases will come to an end. Barry says he doesn't want his children or grandchildren or anyone else to ever have to hear they have a disease that is treatable, but not curable. "I am determined to help find a cure for blood cancers," he said.



If you would like to donate to The Blanton Bunch click here: http://pages.lightthenight.org/txg/Woodland14/blantonbunch

If you would like to form a team for Light the Night, click here: http://www.lightthenight.org/register/

Mission Moment Monday: Nate's Story

by Missy, Nate's wife

Part One:
"Through sickness and in health"... the vows we spoke to one another just short of two years prior to October 24 when Nate was diagnosed with Acute Myeloid Leukemia.

We had a picture perfect life together- met and fell in love in 2009, married in November 2011, bought a beautiful new home in 2012 right before the birth of our amazing son Pierce on January 9, 2013. Everthing was too good to be true.

Nate was doing incredible work at his company in medical sales, as he always does. He had just gotten back from a business trip in Boston where he had interviewed for a manager position in Georgia which he was offered a few days before he was diagnosed with AML. He started feeling like he had the flu and had fever for a week. After getting blood work at a family practice doctor in Missouri City, he was directly admitted to Methodist Hospital in Sugar Land, Texas. He was seen by a Hematologist who diagnosed him with AML. The journey begins...

The day after he was diagnosed I got a call from my manager that we needed to meet up. I was the Marketing Director for a wound care center and was just getting started in the position. I never expected what was coming that day. I was let go due to the company budget not being able to hold my position at the time. Wow. Now what?

We checked into MD Anderson a few days later and began treatment. After two rounds of intense chemotherapy, Nate's platelets never returned to a normal level in order to receive more chemo so it was determined that he would need a bone marrow/stem cell transplant. The search began for a match but unfortunately, there wasn't one. This is when they decided Nate's best option for a cure would be to use stem cells from umbilical cord blood.

Nate checked into the hospital on March 28 and had his transplant on April 3 after a week of heavy chemo. Later he got a call from his company that they could no longer keep him employed and would be coming to pick up his company car.

Following transplant, he was like a newborn baby, highly susceptible to infections and not able to resume a "normal" life for a while. He cannot work for six months to a year. I never thought we would be a family living on disability and unemployment but here we are. 2014 had other plans for us. We are strong in our faith in God and our love for one another. We will get through this and be stronger for it.

Part Two:
Nate had to come back into the hospital on July 31. It turns out he had EBV-PTLD (Epstein Barr virus induced lymphoproliferative disorder) which has advanced rapidly and turned into diffuse large B cell lymphoma. He received 3 doses of Rituxan but the tumors continued to grow. He just finished Cytoxan to try to get the lymphoma under control while he waits to receive an experimental treatment involving killer T cells. He will be transported to Methodist Hospital this week to have the cell therapy infusion and then it's just a waiting game to see if they do the job to rid the lymphoma from his body. We have never been so scared yet so strong in our faith. We know God is the great physician and has Nate in His arms.

UPDATE:
From Missy: "God called Nate to his eternal home on October 19, 2014 around 4:10 p.m. I miss him so much and am getting by the best I can. The medical bills continue to roll in and the world keeps moving although mine feels like it has stopped... come to a screeching halt."

Where In The World Are We Going Now?

Our TNT triathletes had a blast at our alumni mixer last night at J. Black's in theHeights. And quite a few of them registered for our upcoming tri season. Some signed up for Lavaman Olympic Triathlon in Hawaii while others chose our newest destination event: the 70.3 in Puerto Rico.

It's going to be a truly exciting tri season for our local chapter! If you missed our fun party last night, no hay problema (no worries)... Contact our Cycle/Tri Campaign Manager Katy Lea Todd and tell her you are ready to head out to beautiful Hawaii for Lavaman or to el bonito Puerto Rico!

Bruce Cleland, the Beginning of Charity Running

In 1988, when 40-year-old Bruce Cleland decided to form a team and raise money for leukemia research in honor of his toddler who had been diagnosed, he had no idea that he was starting something that would spread like wildfire.

Bruce is credited not only with starting Team In Training, but with the entire charity running movement that is a booming business. This summer Bruce was featured in an article on this topic for the Wall Street Journal.

The article explains that endurance sports used for worthy causes began with Bruce and that last year, the top dozen endurance fundraising events in the country raised more than $106 million. According to Bruce, "Years ago, running a marathon was considered extreme and a true expression of how much someone cared for a cause."

Today, at the age of 66, he competes in triathlons. And, thanks to him, Team In Training has helped bring in over $1 billion for blood cancer research. Wow, Bruce, thank you for showing us all that the world of health & fitness can defeat the world of sickness and death! Go Team!

If you would like to read the Wall Street Journal article, check it out here: http://online.wsj.com/articles/fisher-brothers-executives-turn-into-extreme-sport-fundraisers-1402276479

Mission Moment Monday: Anna & Ashley, A Perfect Match

Anna Sicotte was only 20 months old when she was diagnosed with T-Cell ALL. Her dad Tom will never forget the exact moment on May 29, 2008 when the pediatrician delivered this shocking news.

"I remember clear as day Anna wearing a yellow fleece pullover and squeezing her, telling myself not to drop her," he said, "It was like a wave went through me and took every bit of life and feeling out of me. I went completely numb."

Anna's parents, Tom and Cindy, found being at the hospital quite a challenge, but were comforted by meeting so many other children and families enduring the same struggle. "You get to know them and pray for them and hope they get to go home," Tom said, "Then one day you walk by their room and it's empty and you hope they went home but then find out they didn't make it. Those are the really hard days."

When Anna did not achieve a remission by the goal of 28 days, doctors determined that the best option for her survival would be a bone marrow transplant. On July 29, two months after her diagnosis, Anna went into remission and the search for her marrow donor began. Tom and Cindy were tested, but were not a match. They have no other children, so a search through the National Bone Marrow Registry began. One month later, they heard the news that Anna had 300 possible matches! Of those, they had to narrow it down to the closest match. By September 11, they had their perfect match.

It was a hot summer night in Houston and Ashley McCamant clearly remembers the call she received. "It was just a regular day in July 2008," she said, "I worked a 12 hour shift at the hospital, had arrived home and was sitting at my kitchen island eating and going through mail when around 8:30 p.m. my phone rang." Ashley had been on the National Bone Marrow registry since she was in nursing school and had two friends with leukemia. Both of these friends had been saved by a bone marrow transplant so Ashley got on the list.

Receiving the call that night and hearing that she was one of 300 people who were a possible match was very exciting. She was asked if she would be willing to continue with testing and of course, she enthusiastically said yes. After an appointment to do many tests, Ashely received another call telling her that she was a perfect match and if she was willing, a baby girl with leukemia needed her bone marrow. With zero hesitation, Ashley agreed to donate. All she knew of her recipient was her age, gender and diagnosis, so Ashley and her family began to affectionately refer to her as "Baby Girl".

Although nervous about the procedure, Ashley reminded herself that any risk to herself paled in comparison to the life of "Baby Girl". Fortunately, things went very smoothly. The entire procedure took about an hour. Her pain was very well managed while in recovery and she was sent home with pain medicine. "I was pretty sore the first couple of days," she said, "They did bilateral aspirations from my pelvis, so I had two puncture sites low down on my back, just above my buttocks." But the pain was not severe enough to keep her from going out to eat with her parents that same night.

"The best phrase I've managed to come up with to describe the experience is that it was a minor inconvenience," Ashley said, "but even that seems too strong of a word. It was a tiny interruption in my life, a little blip."

Meanwhile, thousands of miles away in Boston, Anna's troubles were nowhere near the finish line. She had to undergo intense chemotherapy and radiation to prepare for transplant. Her dad had to keep working at home in Connecticut while Anna and her mom Cindy stayed at the hospital in Boston. Anna was in isolation, so even when he did get to visit on the weekends, only one parent is allowed to stay at the hospital, so Tom had to stay at the Ronald McDonald house.

Anna did well with the transplant but it did mean she had to spend the next year in isolation. No one could visit her in her home. And she couldn't go anywhere. "Living in the Northeast made this seem like a very long winter," Tom said.

Cancer is tough no matter who you are or what your age, but for parents, having a child with cancer is devastating. "You  pray to God to take it from them and put it in you so they don't have to deal with it," Tom said, "Having to watch your child scream while doctors and nurses hold her down trying to get a line started in her arm and there's nothing you can do but feel helpless. Having to make decisions that have an impact on your child's health like filling her full of poison or radiation that can cause other damage down the road, dealing with insurance companies that say they won't cover something or that you're not allowed to go to Boston for transplant because it's considered out of network. Keeping a brave face on for everyone and then breaking down when you're alone because you're scared to death."

One year following Anna's transplant, Tom and Cindy were asked if they would like to meet her donor. They most definitely wanted to meet the person who saved their little girl's life. Another year passed without a word, but then they got a call from Boston once again asking if they wanted to meet the donor. They were given all the information for contacting Anna's donor. "I instantly called my wife at work," said Tom, "I said, 'her name is Ashley' and Cindy said, 'Whose name is Ashley?' so I said, 'Anna's donor!'". Tom then sat down to email Ashley.

It was a Tuesday evening, right after Anna's soccer practice, that the Sicotte family met Ashley, the beautiful young nurse whose marrow saved their daughter. For Tom and Cindy, meeting Ashley was "Instant love, like when your child is born," Tom described, "She's so humble and ho hum about what she did too, no big deal. For us, it's a big deal. It was one of the most amazing experiences of our lives and a life changing moment for me."

Anna and Ashley, a perfect match



Although Tom lives in Connecticut and Ashley lives in Houston, these two have decided to run the upcoming Chevron Houston Marathon and raise funds for the Leukemia & Lymphoma Society through Team In Training. They have formed a team called Team Anna/Tash (Tash is Ashley's nickname) and are doing this in honor of adorable Anna who is living a healthy life free of cancer.

If you would like to donate to Team Anna/Tash, just click on their team page:
http://pages.teamintraining.org/txg/houston15/TeamAnnaTashnhx

Anna with her daddy, Tom

Anna with her mommy, Cindy

University Challenge

Colleges for Cures!

We're calling on college students, past and present to join the TEAM! We are one TEAM with one goal- END BLOOD CANCER!

Whether you are currently in school or part of the alumni, get your school to form a team and run the Chevron Houston Marathon or Aramco Houston Half Marathon on January 18 and wipe out leukemia, lymphoma and myeloma while you do it.

For a $1,000 fundraising commitment to the Leukemia & Lymphoma Society, you will receive...

• a guaranteed entry into this sold out race
• a personal fundraising web site
• a training shirt
• a race day jersey
• Inspiration dinner ticket
• finish line celebration (the school that raises the most will get to be part of decorating our finish celebration in YOUR school colors)
• you can earn a hotel stay at the Four Seasons in Downtown Houston the night before the race by raising $1,500.

The university that raises the most from now through January 18 will receive our very first ever "CHAMPS FOR THE CURE" trophy.

If you are ready to take on the University Challenge and make your school a "college for cures", register online HERE (use the coupon code UNIVERSITY15 to get started for only $25).

First Connection

Your support of the Leukemia & Lymphoma Society is not only leading the way to better therapies for blood cancer patients, but it is also providing patients with access to those therapies, granting financial assistance to those in need, and helping to improve the quality of life for patients and their families during their cancer journey.

One of the programs offered by the LLS is the Patti Robinson Kaufmann First Connection Program, a free service that enables patients and their loved ones to connect with a trained peer volunteer who has endured a similar experience.

Talking to another patient or caregiver who has been in your shoes is incredibly helpful. No one understands better than someone who has gone through it already. Our volunteers who participate in this program have all been through extensive training and each year about 6,000 first connections are made through the LLS.

The program is named for Patti Robinson Kaufmann who was a strong volunteer for nearly 10 years at the LLS. Patti was diagnosed with lymphoma in 1997 and was a great source of comfort and strength for blood cancer families. She died in 2008 and the first connection program was named in her honor for her compassion and loyalty.

If you or someone you know is enduring a blood cancer diagnosis and would like to be connected with another patient or caregiver, please call our local Patient Access Manager, Erika Pomares, at 713.840.0483 X 1675.

Mission Moment Monday: Misty's Story

Strong, athletic and beautiful, it's impossible to know by looking at her that Misty Hughes has ever had anything but perfect health. Health and fitness are a priority of hers, but 32 years ago, at the age of 8, her health was stolen when she was struck with Acute Lymphoblastic Leukemia (ALL).

For anyone, a cancer diagnosis is scary and it can mean major changes in the way you live, but for a child, it is exceedingly difficult. "It was scary and lonely at times due to missing a lot of school," Misty said, "and it was tough at school because kids made fun of my fat cheeks."

Misty endured three years of treatments. Her mom was by her side through it all, never missing an appointment, holding her hand through bone marrow procedures and spinal taps. Her dad was also there every step of the long way. In fact, Misty had a lot of family around, including her step dad and siblings. "We had five girls in the house at that time, so it was challenging," she said, "I'm sure I had more of the attention at that time too which made it hard for them as well."

Because she was missing so much school, friendships with children her age were difficult. Healthy kids just did not understand her disease, but Misty was blessed to be able to attend Camp Periwinkle, a camp just for kids with cancer. "It was the best place to go during treatment because all the kids there could relate and understand."

Misty finished her treatments around the age of 12. She has never relapsed! Since childhood leukemia, she has achieved great health once again, spending time at the gym and eating a healthy diet. She and her husband Tom have two adorable sons, Dawson and Brady. They are all very active and enjoy spending time traveling and camping.

For Misty, leukemia is history. But, she has continued to wage war against it on behalf of others. Misty is the Senior Campaign Manager for the Light the Night Campaign at The Leukemia & Lymphoma Society here in Houston. She has been on staff with the LLS since 2008.

"Working at LLS is my way of giving back and giving hope to those who are battling blood cancers," she said, "I feel that being here will hopefully one day save me the stress as a mom if we can find that cure! Without LLS and the people who participate and give of their time and resources, I would not be here today. Research dollars create survivors and one day a cure. The fact that no one is exempt from a blood cancer is a scary thing. I hope that one day I will be without a job at LLS, but until then I will continue to support and participate in funding research!"

Thank you Misty for dedicating your life to this purpose!

May we all continue to fight for people like Misty until someday there is no more blood cancer. Remember, someday is TODAY!

Misty's mom dressed her in a Prednisone costume
for an LLS fundraiser called Jello Jump.

Fundraising Friday

For the next several weeks, this is your fundraising challenge...

Each week, whoever raises the most funds from Monday-Sunday will receive a TNT Headsweats visor (pictured above). Whether you're in winter or fall season, marathon, triathlon or cycle team, whichever current TNT participant raises the most each week gets the prize.

Our local chapter is doing amazing things. Part of what you're raising is going to local researchers. This year, more than $12 million has been awarded to researchers at Baylor College of Medicne and The University of Texas MD Anderson Cancer Center right here in Houston.

In addition to the research, the LLS supports many patient programs and services including co-pay assistance. During fiscal year 2014, $2,758,585.81 was disbursed in the State of Texas to help patients with their out of pocket expenses.

We truly appreciate all of the effort each of you is putting into raising these funds. Blood cancer patients are truly benefitting from your contribution. Thank you and good luck as you tackle the fundraising challege for the next several weeks!

GO TEAM!!!