Last June, we received the most devastating news. Stephanie was diagnosed with an advanced stage of an aggressive Leukemia. Her only hope to survive this deadly disease was an immediate bone marrow transplant.

Our incredible family and friends and the amazing members of Team In Training Santa Barbara rallied together to support our family through this incredibly scary diagnosis and many months of treatment including chemotherapy, full body radiation, and bone marrow transplant.

Now, to celebrate the one-year anniversary of her successful transplant in October, more than 60 people have come together to form TEAM STEPHANIE, and are training hard to run/walk the Nike Marathon or Half Marathon in San Francisco. Stephanie plans to cross the finish line with them.

Our goal is to raise $200,000 to fund a brand new research grant in Stephanie's name - research that will save lives! We hope you will join us and donate to LLS so that we can find a cure.

Why we are doing this: We need a cure!

• Leukemia causes almost one-third of all cancer deaths in children and adolescents younger than 15 years.
• Approximately every 10 minutes, someone in the US dies from a blood cancer. This statistic represents nearly 150 people each day or more than six people every hour.
• An estimated combined total of 149,990 people in the US are expected to be diagnosed with leukemia, lymphoma or myeloma in 2013.

If you have any questions please contact Laura Barella at lbinsb@gmail.com or Shirley Waxman at kswaxman@gmail.com.

As TEAM STEPHANIE, there’s no telling what we can do. Together we can make great progress towards curing blood cancers.

Milestone updates from Stephanie:

October 2, 2013

Happy Birthday to Me

As many of you know, today is the one-year anniversary of my stem cell transplant. Many call the transplant day your new birthday, and that is what it feels like to me. I received new stem cells to replace my old diseased cells. New blood. A new lifeline. A new birth. It was the day I turned into a boy (well, my chromosomes anyway) and changed blood types. One year ago today. The day that gave me hope that I would live many more years free from my old cancer-ridden blood.

Last year on this day, the TNT team in Santa Barbara celebrated my birthday with a party and cake. They made a video, which I watched from my hospital bed that day. This year, I will celebrate with my new friends on the TNT team in San Francisco. TNT has become my family, my support, the place I feel most comfortable as I try to adjust to ‘normal’ life again.

I have met many people in the past year who are about to go through transplant, and many who are recovering from transplant. I think of them every day and send them all my love and hope that they will soon be celebrating their one-year birthdays too.

I have also met too many people who did not survive, and people who have lost loved ones when transplants have not been successful. It breaks my heart to hear their stories and feel their grief. It isn’t fair. Why am I here and they are not? I can only be grateful that I have survived, grateful for everything, every second of every day. I continue on not just for myself, but for those that have been lost, and I raise money and awareness in hope that no one else is lost to blood cancers in the future.

September 26, 2013

Luck and Heroes

The day I learned that they found an anonymous unrelated stem cell donor that was a perfect 10 out of 10 match for me was a very emotional day—happy tears for the first time since my diagnosis. Before that day last September, there was fear and anxiety that I wouldn’t find a match, and wouldn’t have a chance to survive my disease. But then I found out that not only did I have one perfect match, I had four, which no one at the hospital had ever heard of happening before. How lucky am I?

At this time last year I prepared to go into the hospital for a week of full body radiation – lying on the floor with a huge machine above me and iron plates on my chest to protect my lungs, twice a day for two hours at a time for a week – and then intensive chemotherapy. I was hooked up to so many bags of toxic chemicals that they had to bring in a second IV machine, which quickly became known as my “Tower of Power.” All if it meant to kill off my bone marrow and blood cells and prepare my body for transplant.

Through it all, I couldn’t stop thinking about my donor. All I knew about him was that he was a 27-year old guy who was donating stem cells to save my life. Me, a stranger to him. It still leaves me in awe whenever I think about it, which is often.

That is still all I know. For one year post-transplant, I am allowed no contact with my donor. But after one year, if both parties agree, we can contact each other. I cannot wait, and only hope that he wants to meet me as badly as I want to meet him.

My dear friend Jeff was recently told that he is a perfect match for a woman with an acute Leukemia who desperately needs a transplant. As I hear about Jeff’s journey from the donor’s side, it amazes me that he will save a life. It brings me back to those days when I was in the hospital waiting, wondering who my hero was, where was he, what was he doing at that moment? In this moment?

October is fast approaching. I cannot believe it is almost here. There will be so many milestones to celebrate. My “new birthday” or one-year transplant anniversary on October 2nd. The chance to talk to my donor for the very first time. Team Stephanie coming together in San Francisco for a weekend of love and celebration. And of course, the Nike marathon, which we will all do together, as one…. well, as one team with varying levels of speed—I’ll bring up the rear!

I have never been more grateful of everyone and everything in my life. I am one lucky girl. And you all are the reason. Thank you.

August 16, 2013

Bald Heads and Birthdays

On August 1, 2012 I took the elevator up to 11 Long, the hematology oncology floor at UCSF Medical Center and was admitted for a month long in-patient round of chemotherapy. I had already been on oral chemotherapy, but this was different. Chemotherapy was one of the scariest things I could imagine – being hooked up to an IV for hours each day while toxins enter my body and destroy my cells. And I hate throwing up more than anything! The night before I was admitted I was terrified, but my friend Katie, who had been through multiple rounds of chemotherapy, said to me, “don’t think of them as toxins, think of them as soldiers fighting the cancer cells. You are a warrior princess and the chemo is your army.” My friends gave me a plastic shield and sword. That was what I needed. I was ready for battle.

Having blood cancer forces you to learn very quickly about the different types of blood cells and how to monitor your counts. In the hospital, the nurse came in at 5:30am every day to take my blood, and then around 8am she came back to write my counts up on a white board in my room. The goal of the chemotherapy was to wipe out my white blood cells completely, as that is where my Leukemia lives. When I entered the hospital on August 1, 2012, my counts were:

White Blood Cells - Me: 2.5 Normal: 3.4-10

Neutrophils - Me: 1.6 Normal:1.8-6.8

(a type of WBC responsible for immunity)

I was given seven different chemotherapies, including one that was injected directly into my spinal fluid via lumbar puncture. It now sounds awful, but compared to what I imagined, I did okay with the chemo. I had the typical side effects – nausea, headache, fatigue, no appetite, mouth sores, etc. – and I had a lot of trouble and pain associated with the big intravenous catheter in my arm. However, I was able to walk several miles around 11 Long (11 laps = one mile) each day and they even brought a stationary bike into my room so I could keep up my strength. My room had a view of the city and the bay, with the Golden Gate Bridge in the background (which I could see on the few days that the fog cleared). Either my mom or dad stayed with me every night. I also had so many visitors who helped make the days pass quickly. And I loved my doctors and nurses, for their knowledge and caring.

On August 16, 2012, the chemo had done its job – my white cells were gone, and along with them my immunity and, hopefully, my Leukemia. When my nurse came in to write my counts up on the white board in my room, this is what appeared:

White Blood Cells - Me: .3 Normal: 3.4-10

Neutrophils - Me: 0 Normal: 1.8-6.8

It was also on August 16, 2012 that my favorite nurse, Lindsay, shaved my head. Clumps of my hair had been falling out on my pillow the last few days and I knew I wouldn’t be able to stand watching it fall out slowly. Getting it shaved wasn’t so bad. I was prepared, and felt I had more important things to focus on than the way I looked. My biggest fear was that my head was a weird shape, I was sure it was, but it turned out to be pretty round. And my dear friend Allison was in the room with me to comfort me, tell me how beautiful I am, and make me laugh.

I wanted to fight like a warrior princess, so on that day I walked 2 ½ miles – 28 laps around 11 Long.

I now go to clinic every other week to check my blood counts. Here is what they were on my last visit; totally normal!!!

White Blood Cells - Me: 4.9 Normal: 3.4-10

Neutrophils - Me: 2.15 Normal: 1.8-6.8

Today, August 16th is the one-year anniversary of the day my head was shaved and my counts hit zero. More importantly to me, it is my dad’s birthday. I am incredibly fortunate to have parents who have been at my side every second. And I am so thankful that this year we will not be celebrating my dad’s birthday in the hospital.

Happy Birthday to the best dad!

July 20, 2013

Where are my frozen eggs?

I can hardly believe that last July I was sitting across from a fertility doctor trying to decide whether to delay my cancer treatments in order to preserve my fertility, since the toxic chemotherapy and full body radiation would kill my ovaries and all of my eggs – and any chance of having my own children someday.

July was a painful month, physically and emotionally. I received the same amount of hormones given to healthy women undergoing IVF over several months condensed into three weeks. I had to give myself multiple shots in the stomach each day and go to the doctor for an ultrasound every morning at 7am. The hormones sped up egg maturation, until they were ready to be extracted through a minor surgery.

My eggs are now in a cryogenic freezer somewhere – I picture a huge underground modern facility out in the middle of the desert, sort of Austin Powers-esque, with big stainless steal tubes surrounded by cold steam. But really I think they are in a mini dorm style Kenmore fridge in the hospital break room, next to some really old frozen lasagna. When I asked none of the UCSF nurses or doctors actually knew where the eggs are stored.

There are still many unknowns about whether I will be able to have my own children (I am the very first woman to freeze eggs while taking the chemotherapy pill that I was on so it is unknown what the impact will be), but I feel extremely lucky that I had the choice to undergo fertility preservation. Most cancer patients do not. My oncologist, a woman about my age with two young children, allowed me to postpone my more toxic chemotherapy so that I could have this treatment. That is something that many oncologists do not consider. It is also an incredibly expensive process that is not covered by insurance; so many patients cannot afford it. I have met several young women who have survived bone marrow transplants but now will never be able to have their own children.

Today marks three months until the Nike Women’s Marathon. I still cannot believe that there is a group of 60 people – all of you – training for this race and raising money to make sure blood cancer, and all of the related complications like fertility, become a thing of the past in the very near future.

You are all incredible and I think of your strength, selflessness, and compassion every day as I continue my training and think back on these milestones and how far I have come.

GO TEAM!

June 25, 2013

Diagnosis: One Year Later

One year ago today I received a call telling me to pack a bag and emergently get to the hospital, that I was being admitted to the hematology oncology floor. I hadn’t felt well for a few months, but cancer had never been mentioned. The doctors thought it was some weird infection or virus. I was so scared and confused and didn’t believe what was happening. I had never been in a hospital overnight before. My heart pounded as I threw a toothbrush and pajamas in a bag and my mom drove me to the hospital. I was in a shared room that first night – June 25, 2012 – so my mom, dad and boyfriend were not able to stay with me. I laid there alone, awake all night, listening to my bald roommate, who clearly was very sick with an advanced stage of blood cancer, moan in pain. Was that going to be me?

A few days later I was diagnosed with Chronic Myelogenous Leukemia, which had advanced to the worst stage called “blast crisis”. They started me on several chemotherapies right away to try to get my blood counts down to a safe level. I learned that until recent advances, blast crisis has almost always been fatal. However, because of LLS and the research they fund, new drugs like the chemotherapy I was now taking, and a potentially life saving bone marrow transplant, I was given hope to live a long (even if not completely normal) life.

I remember that week like a dream – it feels so far away yet so recent. There were so many pokes and IVs and tests and doctors and nurses and transplant coordinators and confusion and questions and tears.

A week after I was released from the hospital, I was signed up to run in the San Francisco Marathon. I had been so excited to do the first half of the marathon, one of the only races in the city that crosses the Golden Gate Bridge. The reality of how much my life was going to change started to hit me when I realized I could not do the race. I started it with my mom and some of the TNT Santa Barbara team, but I was only able to walk the first few miles before the nausea and weakness was too much and I had to call my dad to pick me up before I even made it to the bridge.

This is one of the many reasons that I am so excited and grateful that I am now training to run/walk the Nike Women’s half marathon with you all. It will be such a huge milestone for me in my road to recovery. At this point, I am still very weak and nauseous, and a two-mile walk is extremely difficult. Training will be tough, as it will be for all of us, but it means so much to me that we will do it together. Train together. And cross the finish line together. It will be such a victory for me, for all of you, and for LLS. Let’s go team!

May 23, 2013

What LLS Means To Me

When I was diagnosed with Leukemia last June, my entire world was turned upside down. I was told I had a very advanced and aggressive cancer, an unbelievable diagnosis for a healthy 31-year old who ran the New York Marathon months earlier. Within days after being admitted to the hospital, I learned that I was in desperate need of a bone marrow transplant. With no full sibling to test for a match, it was up to chance that there was someone in the system that could save my life. I also learned that I would have to undergo some of the most intense chemotherapy given to cancer patients, full body radiation and would lose my ability to have children. I was given a 30% chance of survival, based on statistics.

Until a match was found, the only thing keeping me alive was a new, targeted chemotherapy drug called Disatinib, which was discovered through research funded by The Leukemia & Lymphoma Society (LLS).

One of the first voices that helped calm my fears was a call from my LLS First Connection. Kelley had been through a very similar diagnosis, prognosis and treatment plan five years prior, and was now a healthy young woman getting ready to run her first marathon – the Nike Women’s Marathon in San Francisco. She described in detail everything that I would go through – how did the hair loss thing happen, what was radiation actually like, how did it all feel? This was the beginning of my understanding of what I was going to go through, and my confidence that I too would get through this and be running marathons again. LLS First Connection gave me hope when I desperately needed it.

That first week in the hospital, two members of Team In Training Santa Barbara drove up to San Francisco to deliver a TNT jersey signed by all members of the team. My mom had been a part of TNT in Santa Barbara for 6 years, with no direct connection to blood cancer until now. From that moment, I felt the continuous love, support and encouragement from TNT – all of the cards that arrived in the mail daily and the photos of the team celebrating each of my successes, including throwing a birthday party on the day of my transplant. The team raised an enormous amount of funds for LLS – and kept me feeling positive, optimistic, and incredibly loved and supported.

LLS continued to provide invaluable information and support to my family and me throughout treatment. LLS felt like a friend we could depend on, when nothing made sense, or when we felt alone. LLS also provided financial support as I have spent almost a year now out of work due to treatments and am faced with tremendous medical bills.

In short, LLS has been by our side every step of this journey. That is why my family and I are so thrilled that you have chosen to be a part of Team Stephanie, to help us raise money, awareness, and give back to this amazing organization.

Let’s go team!!!

A huge thank you to our corporate sponsors:

Alameda Advertising & Recognition, Inc.

Vantage PR

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