Monday Morning, October 29th – Hurricane Sandy is expected to wreak havoc down the eastern seaboard, doing major damage, flooding, power outages, in other words, nothing good.
This is not the headline you want to see 7 days before your planned New York City marathon date. While I was worried about the folks out there, I know how likely it was that the weather and news channels were again hyping up the weather, trying to create their own news. Nothing is going to happen to delay or impact the marathon right?
Monday Night – It appears the weather hype-sters got this one right, Sandy punched harder than they thought, the folks out there are going to be in for a very rough ride, but this is New York and New Jersey, they will be back in business in a few days right? Nothing is going to happen to delay or impact the marathon right?
Tuesday Morning, October 30th – The news keeps getting worse, more devastation and destruction, Sandy has brought New York City and New Jersey to their knees, people have died and the clean up is going to take longer than initially expected. Mayor Bloomberg issues a statement, informing us all that “The New York City Marathon will be run as usual on Sunday!”. Wow, this is great news, we are doing important things here: Jim, Sammi, and I have already raised a little over $27,000 for cancer research and we are set to fly out on Friday. Surely the people of New York will understand why the show (or run as it were) must go on.
Tuesday Evening – The News keeps getting worse, Laguardia is closed, and will likely be until Thursday, thousands of people are stranded in New York that want out, and thousands are stranded out of New York that want to get in. What a mess, by the way, lots of conflicting information but every minute the news gets worse and worse. Nothing is going to happen to delay or impact the marathon right? Running the marathon with all of this devastation around us is okay right?
Wednesday Morning, October 31st – Lots of conflicting information is flying around about the marathon, more news about the devastation in New York and New Jersey. I am now having second thoughts about running the marathon. Even if I go out to New York to run AND they hold the marathon, it will be a huge hassle, the entire trip will likely be a logistical nightmare, yet, we are doing important things here, raising money for cancer research, what do I tell the people that have so generously donated (AGAIN)? How do I broach the subject with Jim and Sammi that I am contemplating bailing on them? “Forget it”, I think, if the marathon is being held, I am running it, period, end of story.
Wednesday afternoon, Sue from Team In Training sends out an email confirming the race is still on, but if you choose not to go, you could re-position to a different event, including Honolulu in December. I am a huge history buff, Hawaii would be AWESOME, I would still be running a marathon to “earn” all of those donations, and it would make for an easy decision to cancel New York. Now to get Sammi and Jim on board with Hawaii…. Well that did not go well, Sammi AND Jim are adamant that they will running New York as long as the marathon was being held, period, end of story. I completely understood and agreed with their personal decision, the motivation to run it was high, this is important, what is a little chaos on the trip? We can run this thing and deliver on what we promised, end of story – I AM RUNNING NYC!!!
Wednesday Evening, I watch the news and hear the reports from Staten Island, they are still pulling dead bodies out of houses, just blocks from the starting line of the New York City marathon, I start to feel a little sick. Yet, they would cancel the marathon if it was going to have an impact on those people, right??
Thursday Morning, November 1st – 24 hours to my flight to New York, I am feeling uneasy about making the trip, I am almost sure it is not the right decision for me personally, but Jim and Sammi are going, TNT Alums Mike (Scheduled to be my roomate) and Carey are going, surely I should go? Right?
Thursday mid-morning – I am watching a Today show clip, since I heard Mary Wittenberg from the New York Road Runners was to be interviewed by Matt Lauer earlier in the day. The interview is horrifying! Matt Lauer tells Ms. Wittenberg that EVERYONE he has talked to thinks having the NYC Marathon is a terrible idea, Ms. Wittenbertg’s only defense is blame Mayor Bloomberg over and over again. She takes no credit or responsibility for the race being schedule as usual and very clearly is highly uncomfortable with the situation. At this point I am fairly sure I need to cancel the race, I know Jim will not be happy about it, but it feels wrong for me to go, thankfully Jim was very supportive of me making the right decision for me. I spoke to Mike (again) about potentially moving to the Honolulu marathon, and this time he was supportive of making the move (thank goodness!). I called Sue at Team In Training and asked to move to the Honolulu marathon. So say Sue was the epitome of efficiency does not do her enough credit, she was simply great. She moved me over, helped Mike move over (even though he was just an Alum) and then transferred me over to equally efficient Andrea . In an amazing hour, we were all set for Hawaii!
Thursday mid-afternoon – Flights seem to be running on time to Laguardia, the marathon is scheduled to go on, I am a complete idiot for making the move, I have a huge watermelon sized rock in my gut. I feel horrible, I abandoned my teammates, I should be running the marathon, what the hell was I thinking? (This conversation went on in my head for hours).
Friday Morning, November 2nd – I am ill, I am awake early and am aware of when my flight should have taken off, I am now fairly sure I made the right decision for me, but that does not really help.
Friday Afternoon – My phone rings, it is Mike – “They cancelled it, those idiots cancelled the marathon!!” I was stunned, I was not sure if I heard him right, “You are kidding me right? There is no way they cancelled the marathon on Friday!”. I Googled it, no kidding, they waited until Friday, gave the lamest excuse ever, and screwed over everyone that had already departed for the marathon, I was elated that I had moved to Honolulu, for about 4.3 seconds, then I felt worse than ever, Jim, Carey, Sammi, and most of the TNT Flex team were already there, in fact, they were likely on their way to the inspiration dinner, oh man, does this suck bad.
This week was a complete roller coaster for me, but it was also a weirdly zen like week (For those of you that know me well, zen really does not enter my vocabulary very often without sarcasm). I did think about myself and what I was doing and how I would be impacted, but I really spent more time thinking about the people of New York and New Jersey, my teammates, our donors, and the real victims in all of this, those people fighting with Cancer for their lives every single day, not just when a hurricane uproots their life.
I am SURE not going to New York was the right decision. I am SURE going to New York was the right decision as well. This was a horrible situation for everyone and there were no easy or right answers, only the best choices each individual could muster.
For me, all I can do is move on. Mike and I will be running the Honolulu marathon next weekend, Jim and Carey will be running the St. Jude Memphis marathon this weekend. We all have committed to running with TNT next season with Jim, Mike and I running the San Diego marathon next June. Jim and I have added Mike to the team, and we are going to keep plugging away at our $100,000 goal. Believe me when I say that we will meet our commitment to you donors, we only ask that you keep donating. This running of marathons is not really about us, it is just a good way for us to focus on raising money to continue to fight against cancer.
Thank you for your continued support!
While I feel that my raising money for LLS is important, sometimes I find it difficult to really define the “why” on a deeply personal level when others ask me about it. I have lost friends and family to cancer and specifically Leukemia, but I really have not been in a situation that I had to live with the long term impacts of blood cancers and the ramifications of its treatment plan. Devon Cox is one of many friends I have made running with Team In Training. Devon’s story resonated with just about everyone, and during one of our many runs, Devon was good enough to agree to be a guest blogger on our site to tell his daughter’s story.
My daughter, Story, was diagnosed with biphenotypic leukemia in July of 2010. She was four years old at the time. She was treated with two rounds of “high risk protocol” chemo. She was in complete remission after 60 days. However, because of Story’s particular diagnoses, we were advised that she needed a bone marrow transplant to have the best chance of long term remission, and her older sister was a perfect match. There was no guarantee that a transplant would work, and the process could even kill Story. The only thing we knew for sure was if we chose not to go ahead with the transplant and Story relapsed, the chance of successful treatment would be significantly reduced.
My wife, Christy, and I faced a horrible decision. There was no way to win. If we continued with another year and a half of maintenance treatments, there was a good chance Story could relapse. Her disease, a mixture of T cell ALL and AML, is aggressive. It is also rare and little research exists to use as guidance. Relapse would significantly lower the chances of a successful transplant, or even of achieving remission again. If that happened, how could we live with ourselves?
On the other side was transplant. Story’s sister, Lyric, was a perfect match. The chances of Story’s body accepting Lyric’s donation were good. Would Story be cured if the transplant was successful? NO, but she would have a better chance than without the transplant. Could she relapse anyway? YES, but the chance of relapse would be reduced and we would have a better chance at winning a second fight than without the transplant. To better the odds, though, Story’s life would be altered forever. She would go through more intense chemo, followed by four days of total body irradiation treatments. She would suffer horrible short term side effects. Long term effects are not fully known, but include a higher risk of developing: all kinds of cancer (including non-related leukemia); eye problems; hormone problems at puberty; abnormal bone growth; greater risk of heart disease; bladder problems; kidney problems; liver problems; brain tumors; possible developmental problems, and probable infertility. How could we live with ourselves after doing this to our daughter?
We chose to better Story’s odds of long term remission and eventually, cure. She received Lyric’s bone marrow on November 8th, 2010. Story has been in remission since that day, however, Story had to spend six weeks in an isolated room in the hospital (including Thanksgiving and her fifth birthday) with Graft vs. Host Disease, a result of her body rejecting the new bone marrow. She had a “pain pump” so she could give herself morphine, and a vacuum to suck the saliva out of her mouth because she could not swallow. She had sores and blisters on the inside of her mouth and esophagus, down to her stomach. It is impossible to describe how it felt to see my daughter suffer in this way, and to know that Christy and I chosen this treatment for her. Did we make the right choice? It is a decision that I question almost everyday. The fact is, we will never know whether or not it was the right choice.
Based on what little research has been done, Story has a 60% – 70% chance of long term remission (5+ years). If it were your son or daughter, would that be good enough? Is it acceptable to you that current treatments for so many blood cancer patients cause horrific side effects? Is it okay to cure one disease, but cause many more?
By supporting LLS, we can help improve treatments and find real cures. We can improve the lives of blood cancer patients by ensuring that long term side effects are minimized. We can give parents better choices for their children. We can make a difference.
A big thanks to Devon for taking the time to share his family’s story, and as you can see, even as blood cancers become more survivable, we need to keep pushing for better and less destructive treatments for anyone with blood cancers (or any cancer for that matter).
On this Memorial Day, please donate to LLS and our team by clicking HERE.
As most of you know, I signed up for Team In Training in 2009, shortly after my Grandmother passed of Acute Leukemia. I really enjoyed being a part of the TEAM as a participant, and I made a few friendships that have endured the test of time. In October 2011, one of those TNT acquired friends, Jim Asker told me he was going to be the Coach of the Williamson County (Wilco) Team (my county), he then asked me to be a mentor. I found out that the 2010-2011 year was not a good one for the Wilco team, and there were plans to NOT have it in 2011-2012. Jim was going to try to put it together at the last minute and he needed help. Frankly, I did not want to do it. It sounded like it would be a lot of work and I was not sure I would enjoy it. 7 months later, I can tell you that it was one of the best things I have ever done.
Let me tell you about my little team:
David – I meet David at the first recruiting meeting we had in Williamson County. David liked the idea of raising money for TNT, but he was pretty sure he could not actually do a half marathon, and he doubted he could raise his minimum commitment. I was not sure we would be able to keep David active on the TEAM at first, but I KNEW he could do it, and after the first of the year, David really got into the groove and become a huge part of the team. Not only showing up to do the work, but coming out and support the entire team at nearly ALL of the fundraising events our teammates had, whether at Chick-fil-a or the Good Cup. Yesterday David completed his first half-marathon and he was above the minimum commitment before his company adds another $200 to his account!
James – (Sorry, I was going to do the names in alphabetical order, but I had to talk about James, before I talked about Florian). James has had the experience that makes everyone nod their head and say, “Yup, that is why we keep asking people to donate to LLS”. You see, 5 years ago, James’ daughter Katie was diagnosed with Leukemia. Katie was placed on a special chemo that quickly wiped the cancer out of her body. For those of you not as familiar, the 5 year mark is huge, since if you make it 5 years without a recurrence, the Leukemia is considered CURED. James fought through plantar faciites and finished the half marathon yesterday! James also had another huge (or maybe just tall) contribution to the team: Florian
Florian – During one of our first Group Training Sessions (GTS), James had an extremely tall young man with him. Florian is an exchange student from Germany, and he is about 6’7″ (hard to miss this guy in a crowd). Florian’s first run was pretty incredible, he shot out ahead of the group, running 8 minute miles and looked like a tall gazelle. Florian made it to several GTS’ with James, then one day, he signed up with Team In Training, you see he also had a connection with cancer, but his did not have the happy outcome of James’. When Florian did his mission moment, I was so inspired, I wrote a full blog post about it. Florian was adopted by the team and looked upon as our younger and taller brother. Sadly, Florian had a mishap with a trampoline, causing him to break his ankle, preventing him from running the half-marathon, but he still came out to the start and finish lines to support the rest of the team!
Joe – When Joe first joined the team, he was not sure he could make it to any of the GTS’s, since he had a previous commitment at church. Fortunately, Joe was able to clear his schedule and start running with us on Saturdays. Joe in famous (infamous?) for almost always asking “Are we there yet?” when we have taken less than 20 strides on whatever training run we are doing. Joe kept form and asked us as we crossed the start line of the half marathon “Are we there yet?”. Despite having been very ill for the 4 days leading up to the half marathon, Joe struggled through and finished the half. I hope to be half of the runner Joe is when I am his age.
Lee – Lee really did not want to do this Team In Training thing, but his wife (Tonda) wanted too. Lee is a full time teacher with an active family life, and Lee is studying to be a lawyer (Yup, a little busy). The first time I ran with Lee for a distance was right before the end of last year, and he was tired. I kept trying to get Lee to talk (it is a good way to judge if you are running too fast), but he was silent coming up a couple of hills, yet he hung with Mike and me. Suddenly after coming up a particularly long hill, Lee started talking and joking with us, and I could tell he had turned the corner as was starting to enjoy running. Lee completed TWO half marathons this year, first by running the Tom King Half, then by completing the Country Music Half with Tonda.
Mike – Mike has been my running buddy for 11 years, he makes me run when I don’t feel like it, and I do the same for him. Mike has been a great teammate for the half marathon, and he has figured out a way to run the New York City full marathon with Jim, Sammi, and me! Mike will even be fundraising, though this time for another charity he feels close to, wounded marines. I know with Mike as my training partner, the NYC Full will be accomplished and we will run it well. My wife commented that when watching the live updates on the half marathon, Mike and I were crossing each checkpoint at the same second! Mike and I finished the half marathon at the same time and I cannot wait to do the same in New York City!
Pat – It took me awhile to get to know Pat, he seemed to be a really nice guy, but usually by the time I got done running, he was long gone! Pat is a speedster and was running 2-4 minutes faster than me on his long runs. I kept track of him, and he was doing great as a fundraiser. In the last few months I was lucky enough to spend some post run time with Pat. He is working full time and studying for his RN degree (final test is 4/30/12!!). Beyond that, he is an 8 minute per mile runner, and he crushed the half marathon, running it sub-2:00 at 1:54!
Sarah – Sarah’s first GTS sort of classified the type of person she was. She showed up, was nice to everybody, then went out there and ran smoking fast. Sarah was a little concerned about her fundraising goal, and I had to talk her into raising it to $2,000. After a mission moment that particularly hit home delivered by Glorisa (one of our mentors), Sarah emailed me and said she was super motivated after the mission moment, and she asked me to proof read a letter she had written to her family and friends. I knew when I read her letter that $2,000 was way too low of a goal. Sarah not only was #2 nationally as a fundraiser, she ran most of the season pregnant and she finished the Country Music Half at 20 weeks pregnant!
Veronica – I still am a bit amazed at Veronica. She had previously run in a Team In Training event in New York, she move here in January and joined our Team in February. That is a very short window to get her training and her fundraising in. Veronica not only hit her minimum early, she proved to be a very good runner and a great teammate. She fit in right away and was certainly and asset to the entire team.
All in all, I find them to be an amazing group and amazing individuals. My only concern about being a mentor or coach in the future is that these folks set such a high bar, I don’t know how I could ever have a better team. It was an truly incredible experience for me and I look forward to continuing the friendships I have established!
Even though I cursed him a bit early in the season, I want to thank Jim Asker for talking me into the mentoring job, it really has been a wonderful experience!
For those of you that have not participated with Team In Training (TNT), before our Saturday runs, which we call our GTS’ or ‘Group Training Sessions,’ we always have a “Mission Moment,” which is usually done by one of the participants. They normally explain what attracted them to TNT and why they are running to cure cancer. This week, one of my teammates on our Williamson County Team took the spotlight.
Florian, an exchange student from Germany, happened to end up living with a ‘host’ family in the Nashville area, whose daughter is a Leukemia survivor, and his exchange father is also participating with TNT this season. Florian liked the idea of running to cure cancer, and indeed he had his own connection with Leukemia.
Florian started his Mission Moment, by letting us know that his younger brother Enrico was diagnosed with Leukemia at two years old. Florian’s poignant
Unfortunately, many of our stories end like this, your percentage chance of surviving Leukemia or Lymphoma are climbing, but your chance is still well south of 80%. We need to get this number to 100% for all of the Enrico’s of the world!
My sincerest thanks to Florian for making my mission even clearer. We need to raise as much money as possible to beat this horrible decease! Please click the donate button up on top, and even if all you afford is $1, at least others will know that you are helping!
If this does not choke you up and make you smile at the same time, you have no heart!
Eva’s Story: The Leukemia & Lymphoma Society’s Girl of the Year
Eva shares her story of being diagnosed with leukemia at the age of four, with a look into the process of her treatment and recovery. In the same year of her diagnosis, her father Timothy Hooten was also diagnosed with leukemia, and Eva expresses her experience of triumph and hope through those challenges.
Why Give to LLS?
Invest in the Best
The Leukemia & Lymphoma Society (LLS) is the largest voluntary cancer research agency specifically focused on finding cures and better treatments for blood cancer patients. With the scope and scale to fund many projects at the same time, LLS supports hundreds of cancer scientists around the world.
Research Depends on You
Unlike commercial enterprises that consider blood cancers as “orphan diseases” with small markets and limited profit potential, LLS funds research based on medical need without regard to commercial return or market size. Every dollar invested comes from charitable support from concerned donors.
Extend Your Reach
LLS funds hundreds of promising researchers at leading cancer centers and universities worldwide. And since LLS has no campus or laboratories to maintain, your investment funds more research and less overhead than a donation made elsewhere.
Why Invest Now?
Many scientists, clinicians and clinical trial participants have developed and improved current standards of care over time. It takes about eight years to develop a successful new drug. The time to invest in new therapies is now.
What Will My Donation Do?
- Encourage scientists to pursue blood cancer research. Grants to young scientists help grow research talent even as federal research funding becomes increasingly limited.
- Develop “targeted therapies” that kill cancer cells selectively. By hitting specific molecular targets, these treatments don’t harm patients’ healthy cells, resulting in fewer dangerous side effects.
- Test immunotherapies. Immunotherapies strengthen a patient’s own immune system so it can better fight infections and attack cancer cells, reducing the need for damaging chemotherapy.
- Improve the safety of today’s cures. LLS funds research to predict, manage and prevent complications in patients most at risk for long-term and late effects of treatment.
- Help patients and their families make informed decisions. LLS supplies information and counseling to help guide patients through their cancer journey and access current treatment and clinical trial options.
- Provide financial aid and co-pay assistance. A cancer diagnosis is hard enough without having to deal with its financial burden. We provide programs to help relieve the economic strain of a blood cancer diagnosis.
- Offer community services. Among the wide array of programs LLS provides are those that link newly diagnosed patients with trained volunteers and that help young cancer patients return to school after an absence resulting from treatment.
- Encourage our state and federal legislators to support blood cancer issues. With your help, LLS brings to the attention of lawmakers the urgent need for increased government funding and support of research and patient access to affordable treatment and quality care.
Jim – “Hey Ted, let’s run the NYC Marathon for Team In Training”
Ted – “Ummmm, okay? How much do we have to raise?”
Jim – “$50,000 – It will be easy”
Ted – “That does not sound easy to me”
Jim – “Trust me, it will be easy”
Ted – “Okay, let’s go for it, Cancer Sucks!” (signs up for NYC)
Jim – “Hey Ted, guess what, we are going to raise $100,000”
Ted – “What the heck, how hard can it be to find people to help us cure cancer?”