Guest Post- Amanda's Story and Weinstock Labs

In my first guest post you heard from Heather as she discussed her daughter Paige's battle with Neuroblastoma, as well as the life saving treatment she received at Dana-Farber (and if you missed it, it's definitely worth the read). In today's guest post, I am taking you directly into the research labs at Dana-Farber so you can learn about the vital research that leads to these cutting edge treatments. Research being funded by your generous gifts to DFMC which support the Barr Program research projects at Dana-Farber.

As such, meet Amanda Christie. My husband Dave met Amanda while they both studied at Roger Williams University. While Dave and most of his RWU friends spent their hours in the theatre, Amanda spent most of hers in the science labs (with a little bit of time in the theatre for good measure). Flash forward several years later, and I now count Amanda among my good friends as well. I knew Amanda was wicked smaht (that's New England for extremely smart) and worked for Dana-Farber, but it wasn't until I started running for DFMC that I learned more about the Weinstock lab where Amanda works and the incredible work they are doing, some of which has been funded by the Barr Program. You may recognize Dr. Weinstock's name from this week's Monday Motivation post and Dr. Weinstock is also running his third Boston marathon this year as part of the DFMC team! Well of course I knew you needed to hear from Amanda directly, so I asked her to craft a guest post sharing her experiences from working at Dana-Farber, and I was so moved when I read the beautiful post Amanda created for all of you. It really speaks to the heart of not only the tremendous work being done in these labs, but also showcases the truly dedicated and passionate investigators Dana-Farber is lucky to have working tirelessly to get us closer to a cure. Thank you Amanda - not only for your words, but for the wonderful work you do each and every day!

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This post is probably coming to you from a different perspective than you’re used to. My name is Amanda and I work at Dana-Farber in a lab that has received funding from the Barr Program. My lovely friend Erin thought you might like to get an inside peek at what goes on in our research labs at DFCI.

I work in the lab of David Weinstock which is a translational leukemia/lymphoma research lab. Translational research means that we directly focus on researching new drug targets and therapeutics for immediate transition into clinical trials in patients (as opposed to a basic biology lab). In the past year we have published half a dozen papers, including one that made the cover of Cell (one of the most respected scientific journals in the world), and have opened 3 clinical trials based on preliminary results produced in our lab. Our group includes PhDs, MDs, graduate students and technicians who focus on a wide variety of topics. One team is investigating the role of a particular gene mutation in the formation of angioimmunoblastic T cell lymphoma. Another is attempting to target BCL6 overexpression in peripheral T cell lymphomas. Our leukemia group focuses on the BCR-ABL fusion oncogene in B-cell leukemia and JAK2 signaling in mutant pediatric ALL. A few of us are fervently trying to find new therapies for so-called “double-hit lymphoma”; this is a universally deadly subset of an otherwise fairly curable disease, and new therapeutics are desperately needed. We even have a few people in our lab studying the mechanisms on DNA repair and its role in cancer. This work is difficult, expensive and frustrating, but so rewarding. The dedication I see on a daily basis makes me smile…if you stop by our lab at any minute of the day you will probably see someone hunched over their bench. When my husband and I started dating it was hard to explain why I needed to go into work twice on Christmas (not kidding), on my birthday, and in the middle of the night…now he just accepts this as normal!

I hope the above paragraph didn’t bore you to death. Honestly, I could talk all day and night about my lab because they are an amazingly intelligent, passionate and dedicated group of people. I could go on and on about my love of Dana-Farber, because it truly is an inspiring place to work. And I could definitely have a never-ending conversation about cancer research, because it is a fascinating, exhilarating and devastating world, and one I am so grateful to contribute to. None of these things would be possible without people like Erin. People who give up their leisure time, their comfort and sometimes their sanity (?!) to brave Boston winters training for the marathon, who advocate for this much needed research, and who raise funds that have directly contributed to saving so many lives. The Barr Program is such an important enabler of research here, and our lab feels lucky to be a recipient of these hard-earned funds. Even a dollar can help change the world, and I promise that we are working our hardest to make sure the money raised goes to finding cures.

Also, as a public service announcement, science is really fun. Don’t let your kids tell you “I’m just not good at science” or “I’m not smart enough.” I hear this all the time and it breaks my heart. You are smart enough and science is awesome. If anyone has questions or wants to know more, please don’t hesitate to ask or go to our lab website at http://weinstock.dfci.harvard.edu/.

And most importantly, go Erin! Run run run!

Gifts of $10 or more made in March qualify you for 
March Marathon Madness Opportunity Drawings!!!

 Check out the official DFMC video featuring Dr. Weinstock and yours truly!

March Marathon Madness!

It's March 1st which means two things.

First, next month I am running the Boston Marathon - ahhhhh!!!

Second, all month long you have the chance to win some AMAZING prizes during my March Marathon Madness Opportunity Drawings!!!

Read on for details on each week's prizes, how to enter, and more. And since 100% of every $10 entry goes directly to funding research projects via the Barr Program, you are already a winner just be entering! Last year these drawings helped raise over $5,000 for vital cancer research so that is the goal to beat this year, and you all know I like setting goals and surpassing them so...let the madness begin!

HOW DOES IT WORK?

Each week in March there is a different prize up for grabs. During each week, every $10 donation increment made gets you one entry for that week's prize. So $10 = 1 entry, $20 = 1 entry, $30 = 3 entries and so on. At the end of the week, all entries are entered into a random drawing and a winner is chosen. It's that simple!

HOW DO I DONATE TO GET MY ENTRIES???

You can  donate directly via my DFMC fundraising link (click here)

CAN I JUST MAKE ONE DONATION AND THEN SPLIT MY ENTRIES BETWEEN THE VARIOUS PRIZES?

You sure can! Just make one lump donation and then email me to let me know how you would like to allocate your entries. For example, you can donate $50 and then tell me you would like one entry for Week 1, two entries for  Week 3, and two entries for Week 4. Or you could donate $100 and ask for two entries to Week 1, 2, and 3, and four entries for Week 4.However you want to split your $10 increments is fine by me, and with no limit on how many times you can enter you can give yourself unlimited chances to win while supporting a great cause!

CAN I ENTER THESE DRAWINGS AND STILL SPONSOR-A-MILE???
Absolutely! If you have been waiting to sponsor-a-mile with a gift of $126.20, now is the time do so because you will also gain entries to any of my March Madness opportunity drawings! And because I just love seeing ya'll claim those miles and give me a reason to make each one special, I will round your entries up to a lucky 13 giving you even more chances to win! Simply make your gift of $126.20 or more via my DFMC donation site and then email me to let me know (a) which mile you would like from the available miles, and (b) which week's drawings you would like your thirteen entries allocated to! 

ARE YOU GOING TO OFFER SURPRISE SECOND CHANCE DRAWINGS BECAUSE YOU LOVE YOUR DONORS OH SO MUCH?
You bet I am! Each week I will be offering a SURPRISE second chance drawing to everyone entered for that week's prize(s)!!!

I HATE WINNING AWESOME PRIZES BUT STILL WANT TO DONATE - IS THAT OKAY? 

Sure is, but I might still send you a cookie! 

OKAY, OKAY WE GET IT - NOW WHAT CAN WE WIN??? 

I know why you're all here - let's get to the good stuff!

            

Week 1 (March 1st - March 6th): Cozy Cookie Bundle

DFMC Mugs and Fancypants Baking Company Cookies! 

This package with a retail value of $50 includes two official DFMC mugs, one bag each of Fancypants Baking Company's addictive mini crunch cookies in Double Chocolate, Vanilla Sugar, and Brown Sugar Oatmeal, and some of Fancypants custom DFMC sugar cookies made just for me! Fancypants is based right in my town of Walpole, MA and not only are their cookies delicious (as in, we had to hide them away so we don't devour them before we choose a winner), but they are also all natural and both GMO and nut free! These are treats you can feel good about sharing with the whole family - but they are so good you may not want to!

Every $10 donation = 1 entry

Week 2 (March 1st - March 6th): Thirty-One Gift Bundle

Creative Caddy organizer, Everything Crossbody bag,  All About the Benjamins Wallet with wristlet strap, and Letters from London ID Case! 

This package with a retail value of $157 includes some of Thirty-One's best selling items and is courtesy of authorized seller Bailey Glass of Bailey's Baggage! First is the Creative Caddy in Dotty Chevron, which is the perfect thing for organizing odds/ends in a kids room, craft area, bathroom, or office. Next up is the Everything Crossbody bag in Black Tweed Dot which is large enough to carry all your essentials and can be carried as a tote OR worn crossbody with the removable/adjustable long strap. The All About the Benjamins wallet with wristlet strap in City Charcoal Pebble doubles as both a wallet and a chic wristlet and keeps you organized in style. Rounding out this bundle is the Letters from London ID case in Teal Affair Pebble and is perfect way to tote your ID when traveling light or business cards!

Every $10 donation = 1 entry

Week 3 (March 14th - March 20th): Coach Handbag 

Coach Mickie Handbag in Chalk (off-white) grain leather!

With a retail value of $450 this beauty is made of soft grain leather in Chalk, which is an all season appropriate off-white. Antique hardware completes the look, and a removable strap plus ample storage makes this the perfect bag for going from gym to office to cocktails in style!

Every $10 donation = 1 entry

Week 4 GRAND PRIZE (March 21st - March 31st): Red Sox EMC Club Tickets w/Parking

Two EMC Club Tickets to a Red Sox game selected from available 2016 dates plus parking! 

With a $700 value, this grand prize is courtesy of the Kessler Group.The winner will choose from selected 2016 dates and start their visit to Fenway with reserved parking in a lot directly across from Fenway. Then you and your guest will proceed to the VIP entrance for the luxurious EMC Club which is situated one level up directly above home plate. These tickets also include access to the exclusive EMC Club restaurant which opens 2 hours prior to all Red Sox games and provides a unique gourmet dining experience (dining not included), as well as a full bar and lounge area. You can come early and enjoy the ambience before proceeding to your seats on the EMC Club balcony. Open to the action but protected by an overhang with heaters in case of inclement weather, these are some of the best seats in Fenway! Full seat service for drinks and snacks, and dedicated EMC restrooms with no lines complete the luxurious amenities offered in the EMC Club. Trust me, once you sit here you will never want to sit anywhere else!

Every $10 donation = 1 entry

Actual view from EMC Club Seats! 

Monday Motivation - 7 Week Countdown!

7 weeks from today we run the Boston Marathon. This morning was the third morning in a row that I awoke at 5:00am with high hopes of running 16 miles. However the only running I did today was to the pharmacy, to finally pick up a steroid prescription in hopes of calming down my angry asthmatic lungs (which have been more active this week than the rest of me).

And believe me, I never thought the day would come when I would say I am frustrated because I couldn't go out and run 16 miles. But I am. It is maddening to feel fine with the exception of your lungs rebelling with every breath. To be stuck at home knowing you are causing more work for other people. To feel weak when all you want to do is be strong.

But these cough riddled hours on the couch have given me pause to reflect on just how very precious our health is. And it is a stark reminder that I am running because each and every day, people's lives and health are forever changed in the blink of an eye when they receive a cancer diagnosis. And so who am I to complain when the frustration I am feeling is merely momentary and will (hopefully) subside in coming days? When the "inconvenience" of my ailment is but a fraction of what cancer patients and families endure for not just days or weeks, but months and years. When I know people who are sitting in treatment every day and then heading out to log miles on the weekend because they won't let their diagnosis hold them back. And when there are countless parents, friends, and loved ones who have to be strong all the time for those who simply can't be. Well, that sorts of puts things in perspective doesn't it?

So instead of whining about what I missed out on this weekend, I am going to focus on what will drive me forward the rest of the week.

When people ask me why I am running again this year, one of the top reasons is because I am simply so proud of the impact the Dana-Farber Marathon Challenge has had, and continues to have, on the future of cancer care and cures. But what do I really mean when I say that? Well for starters, it means that when you make a gift to DFMC, 100% of each and every dollar goes DIRECTLY towards funding research projects via the Claudia Adams Barr Program at Dana-Farber. Not a single cent goes towards the tremendous amount of lady/man power, support, and resources it takes to get 500+ runners to the starting line on Marathon Monday, or towards the "administrative" costs you will often encounter when supporting similar initiatives. Which means that even a $10 gift can help make a difference (and help make you a winner during my March Madness opportunity drawings)! 

As such, today I want to highlight the work being done by David Weinstock, MD and the Weinstock lab, which is particularly fitting in advance of my next guest post which will give you an insider look at the work being done in this lab!  With support from the Barr Program, Dr. Weinstock and his laboratory members collected and analyzed samples of a rare leukemia called Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN). BPDCN is a rare, aggressive form of leukemia that affects approximately 800 people in the United States each year. Patients with BPDCN face a tough prognosis, and researchers are working hard to learn more about this illness. Dr. Weinstock and his team discovered a mutation that can promote the growth of BPDCN cells. Having identified the mechanisms through which this mutated gene drives leukemia, they are now testing a strategy to target this mechanism. Dr. Weinstock's team also discovered that this gene is mutated in many other cancer types, including melanoma, ovarian cancer, some forms of lymphoma, and other types of leukemia. Dr. Weinstock's research could therefore have major implications not only for BPDCN, but could also lead to the development of new therapies for many other forms of cancer. Dr. Weinstock and his collaborators published some of these findings in December 2014 in the journal Nature Medicine. Oh and if that isn't amazing enough, Dr. Weinstock is also running his third Boston marathon this year a part of the DFMC team!

Still think $10 doesn't make a difference? Think again. 

Guest Post - Paige's Story, "Five Years Later"

Since becoming a part of the DFMC family (and let's face it, this really is a family and not just a team), I have met so many amazing people who have inspired me with their stories of resilience, healing, hope, and yes - even struggle and loss. One of my goals in my second season was to share some of these stories with all of you in hopes of showing why our mission is so important, as well as the true and tremendous impact that your support has in getting us closer to a world without cancer. And what better way to hear these stories than from the special and brave people who have shared them with me.

With that in mind, today I introduce my first guest post written by super Mama extraordinaire Heather. Four years ago, Heather was one of the first people to welcome me to Boston as I interviewed for my company. I learned two things in those first days in Boston which would stick with me. First, that our office was located on the 26 mile mark of the Boston Marathon course (after asking "oh, does it go by here" as my coworkers excitedly talked about its approach that Spring and then looked at me like I had three heads - yeah, it goes by here). Second, that there was a pretty awesome place in Boston called Dana-Farber. The latter I learned via hearing Heather discuss the cutting edge and life saving treatment her young daughter Paige had received at Dana-Farber and the Jimmy Fund Clinic. I will never forget the day that Heather sat in our office suite and reached for tissues after learning that Paige's routine scans came back questionable. "I thought Paige was cured?" I naively thought to myself. The look on Heather's face was one that no parent should ever have and it will remain forever seared in my memory. It was in that moment that I realized just how devastating this disease is, not only at diagnosis and through treatment but in the ensuing years afterwards. It is not merely a detour from the road you are on, but a complete departure to an entire new road all together. There is no going back. And that's not to say that road is necessarily bad, it's just forever different. So here now, in Heather's own words, is what life is like on that new road. My love and gratitude to Heather for offering to share Paige's story with all of you, and Paige will be among those who I run in honor of on April 18th and always. 

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"Five Years Later"

May 3, 2015 marked five-years since we heard those unfathomable words, “your daughter has cancer”. I still remember like it was yesterday as well as the weekend before that fateful MRI and ultrasound on Monday, May 3, 2010 revealing her disease. That weekend, we were going big-girl bed shopping for Paige because Miss Maya would be arriving in just two short months and needed the crib to rest her little head. Paige wore a smocked sunflower dress that day. The Friday before, we had met with an orthopedist who reviewed her knee x-ray from the previous Thursday which had indicated a lesion on her left knee. He laid out all the possible scenarios but never focused too much on cancer. Instead, he scheduled an MRI for that following Monday. We dragged through that weekend thinking, “there is no way this could be cancer. Cancer doesn’t happen to little kids… especially our little girl. But what if it is cancer? What do we do then?” We cried a lot that weekend out of fear and not knowing. That was our last normal weekend before cancer changed our lives.

Monday came. The MRI was done under sedation which was terrifying. We had no idea then that our little 22 month old baby girl would be sedated at least four more times that week and dozens and dozens of times in the years after that. The hematologist/oncologist met us after Paige recovered from sedation in the playroom at Tufts. I remember not grasping immediately who this doctor was and why she was talking to us. I was just looking for MRI results and not paying attention to the messenger. The messenger wanted to have an ultrasound done of Paige’s belly so off to radiology we went again. That beautiful baby girl laid patiently on the ultrasound table with jelly smeared over her abdomen and a weird “stick” pushing on her tummy while I held her hand and sang about a million versions of Wheels on the Bus. The tech left the room to get the head of radiology. He returned, poked her belly with the stick-thingy while the tech looked at us with sympathetic eyes.  He then told us about the mass in her belly the size of a lemon. No one had said cancer at this point. 

We met with the hem/onc doc again after that where she said she needed to do more tests and we would be admitted. They took blood and did a biopsy of her knee where the lesion was first discovered. Taking her little body into that operating room the first time was unbearable. The days started to fold into each other after that because neither Garrett nor I slept and there was a boil-water requirement in Boston that week (that isn’t really relevant but I remember showering at the hospital 7 months pregnant trying not to get water in my mouth!). I believe it was the next morning when the biopsy and labs came back that confirmed neuroblastoma. The doc had asked to speak to us out of Paige’s room near the nurses’ station to give us the news. She used this strange word “neuroblastoma” and I wrote it down. I still hadn’t heard the word cancer so I asked the question, “Is this a type of cancer?” Her response: “Yes, your daughter has cancer.” I asked the question that I didn’t want to know the answer to after that, “What is her prognosis? What are her chances for survival?”. After the doc tried to avoid answering, she finally said, “50/50”. 

That week at Tufts was horrific. The procedures Paige endured, the information we had to learn, the choices we had to start making were overwhelming. The first difficult decision we made was to transition her care to Dana Farber where she could receive all phases of the COG protocol she was to follow and where she would have a solid tumor specialist managing her care. Our families, local adoptive families (those who ‘adopted’ us since we moved to Boston), and friends were more than incredible from the very beginning and right through the end of Paige’s treatment.  I reflect often on those people who came out of nowhere offering all different kinds of support; people who were always close to us as well as those I hadn’t spoken to in years. It still amazes me.

Every day of Paige’s treatment is vivid in my mind but it seems like a dream. You know those dreams when you wake up and although images might be kind of fuzzy but you remember details like smells, feelings and emotions? That’s what those 15 months are like for me. I thank God every day that Paige has very little, if any, memory of that experience.  

Five years after her diagnosis, Paige is still with us. Are we blessed? Did we win the gene pool lottery (that’s ironic, isn’t it?)? Was it something we did to get to this point? I don’t know. I think it’s just luck. I read a blog recently of a mother who has a child who appears to be “out of the woods”. She made such a great point in describing how children with serious medical conditions are never out of the woods; they live in the woods and make the best of the leafy canopy that covers them from basking fully in the freedom of the sun. I know there are people who think we are slightly nuts when it comes to the food we eat and the products in our house. But here’s the thing: Paige has had more toxins pumped into her little body at age 7 than 10 people will have in a lifetime. It is our job to limit the other toxins she is exposed to in her environment because the woods are a freaking scary place and we never know when one of those long term effects from her aggressive treatment will manifest into something else. We know all of the potential long-term side effects that Paige will be managing for the rest of her life and its’ flipping terrifying. The woods suck but, here we are. It’s our job to do everything we can to try to prolong the occurrence of those late effects and make her body strong now to fight later.

Part of living in the woods is living with and managing the care of a child who needs “a little more”. Paige still has a million doctor appointments with specialists both on-cycles and off cycles. I often refer to the number of “-gists” that Paige has in her life and that list continues to grow: oncologists, cardiologists, radiologists, allergists, nephrologists, pulmonologists and more that I’m “gist” forgetting.  We spend a lot of time with her different audiologists: one for her actual hearing loss and one for the hearing aids. Additionally, I spend a lot of time with specialists in her school as well as her teacher in figuring out the technology to help her hear better during class and working with the deaf and hard of hearing specialist to ensure the technology is accurate. Beyond the technology in school, it’s staying on top of the specifics of her needs in the learning environment and watching closely for signs of cognitive impairments brought on by the treatment she endured, not the cancer itself. Her hearing impairment and learning development alone are consuming enough not to mention all of the organs we must monitor so closely which is why I don’t have much left to give for all the normal kid stuff (I’m still taking applications for a wife, if anyone is interested) and I have given myself a 50% efficacy rate as a “normal” mom. 

I received a call from the Cord Blood Registry (CBR) last month saying that our five years of free cord blood storage (free because of Paige’s diagnosis) for Maya’s cord blood was ending in July. That also took my breath away. If it weren’t for Paige’s diagnosis, we never would have considered banking Maya’s cord blood because we didn’t bank Paige’s. I’m so happy we did and we will continue to do it because every day, brilliant minds are finding ways to use that powerful cord blood to help people. The CBR web site indicates stem cells are used 73% of the time for the person from whom they were taken and 27% of the time for siblings. I feel like it is an investment in both of my girls’ futures and pray we will never have to use them but I’m happy knowing they are there.  I recently read a clinical trial where cord blood is being used to help children who have suffered hearing loss like Paige’s. If we would have reserved Paige’s cord blood, she could have potentially participated in this trial to see if her hearing could be regained. I cannot and do not dwell on that past because if you would have asked me what I thought the chances of one of my children getting cancer back when I was pregnant with Paige, I never would have imagined that it was a possibility. The call also reminded of driving around five years ago with a cord blood kit in my car in case I went into labor when I was at Children’s or at Dana Farber. Ahhh… memories…

In five years, none of us are the same. My family outwardly resembles the people we were five years ago (with the addition of wrinkles and gray hair… lots of gray hair) going into this experience but we are forever changed. I know that about myself and those who knew me best before dx would probably say the same. Something was taken from us and although I have tried hard to get it back, I just can’t fill that space. For Paige, I believe that my free-spirited, willful, happy child is probably who she would be regardless of her diagnosis because she doesn’t remember it and her approach to life is hers alone. I admire that about her not to mention about a billion other things.

We had Paige’s tests in August… note I didn’t say scans. Everything came back clear! This is the first time in five years that Paige was not lit up from the inside, squeezed between MIBG plates, sedated for MRI or had her breathing controlled by another human in order to see what’s going on in her little body. This time, she had labs, urine, pulmonary, cardio and will have renal later. This was the first time in many years that she actually had to have a “poke” to draw labs which was a little stressful for her. She is the bravest person I know, not only from what she endured through treatment but also just in her drive to experience all life has to offer and always with that smile that lights up a room. We’ve also just added another –gist to her list of doctors too: an endocrinologist to monitor her body as it matures and approaches puberty at the right pace. So, I don’t know what to call this feeling that I have referred to as scanxiety for the last five years… is it just anxiety? Well, that sounds like a normal emotion… I’ll take it... at least until February.  

Paige started second grade this fall and Maya started kindergarten. I still can’t believe it. Paige’s teacher has described her as “a bundle of joy”. She is certainly a bundle of something! Five years ago, I had prayed for second grade not because I wanted to blink through the bad stuff but because in my warped mind, if she got to second grade it meant she would be five years passed diagnosis and on the other side of the scary odds. She is there. Although we continue to wander the woods on high alert, there are breaks in the canopy where the sun filters through shining more and more light on the time we have to enjoy a seven year-old who is on a normal-kid path. 

I decided to retell Paige's diagnosis story this past September because it was Childhood Cancer Awareness Month and while it is now February, awareness of childhood cancer is a year-round struggle. If you are reading this, you are aware already. My request is that you help spread the word of childhood cancer and that with the right funding and attention, more kids can have a response like Paige has had. Share her story. Encourage friends to donate blood, platelets or time at their local children's hospital because all of those things can save lives as much as funding can. Wear a gold ribbon and when asked why, tell them that you know a Super Bug who has Super Friends who all deserve more.

Paige 





Click HERE for Info on Donating Blood at Boston Children's Hospital

Click HERE for Info on Donating Platelets at Boston Children's Hospital

Monday Motivation - 11 Weeks To Go!

Fact: Saying in January that you are running a marathon in April is a lot less scarier than saying it in February.

The 2016 Boston Marathon is 11 weeks from today and things are really starting to heat up - no, literally. It is currently 62 degrees in Boston, birds were chirping as I left for work this morning, and most of the snow in our yard has melted away. This is a far cry from last year's frigid temps and the mountains of snow that towered over me for months. And I am not complaining! However, if that groundhog sees his shadow tomorrow I respectfully request the right to ask for clarification as to whether that would be six more weeks of this winter's weather or last year's.  

If the weather isn't motivation enough today's impact statement reminds us why will run our hearts out on April 18th (and in the 77 days leading up to it). While every type of cancer diagnosis is life changing, none are perhaps as scary as a pediatric cancer diagnosis. So today I wanted to highlight the work of Barr investigator Dr. Rani George, whose research into neuroblastoma in children is leading to new and innovative treatments to fight this aggressive cancer.

Neuroblastoma has historically been a very difficult cancer to treat in children, and, although

chemotherapy and stem cell transplants have improved survival, relapse is common and nearly

almost always fatal. Dr. George and her team used Barr Program funding to discover that about 10% of pediatric neuroblastoma tumors contain a mutation in the gene ALK. Several successful drugs

already exist to treat other types of cancer that demonstrate these same ALK mutations, so Dr.

George and her team were able to initiate clinical trials that could result in new treatments and have the potential to improve survival for children with neuroblastoma. This research also paved way to continued research by Dr. George and her team to investigate the mechanisms of ALK activation and regulation, as well as strategies that can be employed therapeutically. You can learn more about Dr. George and the tremendous research being done by her labratory HERE.

Today you are learning about the clinical side of neuroblastoma and how your generous support helps to have an impact on this and other cancers. Tomorrow I will share a very special post that shows the other side of a Neuroblastoma diagnosis and you will not want to miss it. Until then, I leave you with one of my favorite pieces of motivation which I believe both runners and researchers can appreciate.

 

Monday Motivation: 12 Weeks To Go!

Happy Monday ya'll! 12 weeks from today we take to the streets for the 120th Boston Marathon and time is really flying by. If I have been a bit silent lately it is because I was kept busy by back-to-back trips to visit family and my favorite toddler running "coaches" - think lots of unintentional stair repeats and speed work (it's amazing how quick one can move when a tipping glass of milk is involved). Lots to catch up on this week including exciting fundraising opportunities and the introduction of my first guest post which is not to be missed, so be sure to check back as the season flies into full gear. But for now, here is your Monday Motivation!

After a 13.1 mile run with the team this past Saturday, I headed over to Dana-Farber for our Patient Partner welcome party. It is hard to believe it has been just about a year since I met Darla and her family, and each and every time I see Darla it is a reminder of why this team and our mission is so important. Because while much of the party was spent seeing just how many gummy bears Darla could put on her ice cream sundae (they are her fav) and hearing all about her Make-a-Wish trip to Disney over the holidays (where, according to Darla, Belle informed her she was my favorite princess- naturally), after the party we headed towards the garage which took us past the Jimmy Fund Clinic. And no matter the amount of kid friendly lights, toys, and decorations that make the clinic as fun and welcoming as possible for its patients - at the end of the day it is still a clinic. In the middle of a hospital. For kids. With cancer.

So as we strolled towards the garage I watched as Darla bounded ahead of me and then casually turned and said "this is my clinic where I go for treatments." With the same nonchalance as when she showed me where she practices for cheerleading, or where her dance recital was last year. The location is so familiar to her and forever embedded in her childhood. All at once I was struck again by the magnitude of how this disease forever changes those it touches, but also by the safe haven and hope that Dana-Farber provides for those bravely fighting it.

As we continued towards the garage, we came upon one of my favorite parts of the Dana-Farber campus - Marathon Way. In addition to highlighting each year's DFMC singlet, the team's history and milestones, and the previous year's check to the Barr Foundation (man did I love seeing that cardboard check again!), visitors have the chance to "travel" the marathon course from start to finish. And so, here is my motivation for this Monday and the next 12 that follow. And probably many more Mondays after that. I may have a long way to go until I get to that finish line, but knowing this girl is running beside me will keep me going until I get there!

                  

It's a long way from the start to the finish, but Darla is ready to help me take on the challenge!

Pointing to a pic of Darla and her family at Fenway Park which

is featured on a timeline honoring the longstanding commitment

of the Red Sox to the Jimmy Fund and Dana-Farber. 

Darla was in treatment when that picture was taken, and

to stand next to this smiling whirlwind of energy with a head full of hair

while looking at this picture of her tiny, balding, and in her Dad's arms was

a bold reminder of the miles she has come since her diagnosis 

Click HERE to View Erin's Super Bowl Squares for Cancer Research - $30 gives you the chance to win $100, $300, or $1000 while providing a $2500 donation toward cancer research!!!

Monday Motivation - An Open Letter to My Laziness

Dear Laziness,

So we meet again. We broke up quite a while ago and I have been just fine without you. Blissfully happy, in fact. However, lately I have noticed you trying to win me back. Your callous giggle as you push snooze on an early alarm meant to get me out the door for a run. Your brazenness as you pile another cookie on my plate. And your haughtiness while ignoring baskets of laundry ready to be put away. It seems you are everywhere I look these days and I do not like it.

When I first broke things off I knew you wouldn't take it well. You lingered around the corner always ready and trying to lure me back. But I stayed strong. And eventually, your voice became but a whisper and distant memory as I conquered my to do lists, set and surpassed goals, and enjoyed a productive life without you.

But you are persistent and, well, now here we are again.

So I am here to tell you, it stops now. We had our little holiday fling but now you have to go. No matter the rush I may feel when you first arrive, I am always left frustrated and unfulfilled while regretting all that could have been if I had only just ignored you and your pesky ways.

This is goodbye (until 16 weeks from today right around 5:00pm when I may welcome another fling- but you are NOT moving back in and I want my key back).

Not Yours,
Erin