March To A Million

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Join us in helping our National Team Salesforce.com in their March To A Million this year!

In 2015 Salesforce raised an amazing $563,763 making them the #5 National Light The Night Team overall. Their team goal for 2016 is to raise $1,000,000 and if the team hits their goal, their CEO Marc Benioff, will personally match this amount making their total fundraising efforts 2 MILLION dollars which could potentially make them the #2  National Light The Night Team.

Please watch this amazing video from Salesforce.com – Click Here

The Leukemia & Lymphoma Society’s Light The Night Walk funds  life-saving research and support for people battling cancer.  Friends, families and co-workers form fundraising teams and millions of consumers help by donating at retail outlets.  These efforts culminate in inspirational, memorable evening walks in nearly two hundred communities each fall across North America.

The Leukemia & Lymphoma Society (LLS) funded research aims at helping all blood cancer patients live longer, healthier lives.  We will continue to support research through our  innovative and integrated funding programs, until every patient has a safe and effective  therapy.  Currently LLS:

  • Supports research programs in the U.S., Canada, and seven   other countries.
  • Provides services including family support groups, free seminars, direct patient financial aid and co-pay assistance.
  • Educates through our Information Resource Center.
  • Advocates to policy makers at all levels of government.

Come Join Us at our Light The Night Walks this year!  Register Here

 

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The Inspiration Initiative – Jessica Moran, 2016 Honored Hero

Please meet one of our Honored Heroes of the 2016 Boston Light The Night! This is Jessica Moran. She is a true inspiration. There isn’t much that I could write in this week’s blog about Jessica that she hasn’t already said, photographed and lived. Please go to her blog, Facebook, Twitter, or YouTube and see just how strong, beautiful and amazing Ms. Moran is!

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Blog: https://inspirationinitiative.com/
Facebook: https://www.facebook.com/inspirationinitiative
Twitter: https://twitter.com/jessy_moran

 

And last but certainly not least…You must click on her YouTube and watch her videos!
This was specifically for an Applebee’s fundraiser…
https://youtu.be/0ttf1bRKgJk

 

Keep on moving forward Jessica and we at the Massachusetts Chapter of the Leukemia & Lymphoma Society cannot wait to see you in Boston!!

Life After for the ‘Lost Generation.’

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“You learn quickly that cancer is an inhospitable house guest: It shows up when you’re least prepared and leaves your place ransacked with no money for a maid.” – Andrew McMahon stated in his patient-advice column for the US News on October 26, 2015.

While we continue to improve treatments and lifespans of those touched by cancer, there is one “lost generation,” that continues to look for more outlets and more efficient treatment plans and therapies and even facilities to complete their journey after diagnosis. The adolescent and young adults are in quite the in between when it comes to these medical advances. Many times doctors and hospitals either place these patients in facilities with children much younger than themselves, or quite the opposite, in facilities with patients sometimes 20 years their senior. It makes for the process to be just that much more grueling on the young cancer fighter.

Many times people who are not directly affected by cancer(s), don’t see the exhausting journey a cancer patient and/or survivor must go through. The entire process can put a large toll on a person’s emotions, body, finances and even relationships, friends, families and significant others alike. Besides physical setbacks, such as feeling “older,” not having enough energy as you once did or even scars, or weight change, this generation can also be struck with financial burdens due to insufficient insurances/job benefits and even high student loans. Not only are we asking this youth to come out with a successful cancer eliminating procedure, but we are now pushing them into the real world with many other burdens placed on heavy shoulders.

Andrew McMahon, now in his early-thirties is a 10-year leukemia survivor and an influential singer-songwriter. Some would know him from former projects such as Jack’s Mannequin and Something Corporate or his recent solo project, Andrew McMahon in the Wilderness. Through McMahon’s cancer treatment he was placed in a facility with others while beyond his own years. Getting the support and understanding therapy options that were offered around him didn’t connect to his youth and emotions he was feeling. The place in his life that he was currently experiencing was entirely different than the other patients around him. While going through his own treatments he could see how this “lost generation” needed a voice to advocate and show what was needed most, support.

McMahon has since started a  charitable foundation called Dear Jack Foundation (dearjackfoundation.com) that supports and advocates for the adolescents and young adults diagnosed with cancer.

amm_wilderness_bg2Andrew McMahon, photo shoot for his Andrew McMahon in the Wilderness project.

The best way to help is be an advocate for those who don’t have a voice. Be a support system for those who just need some assistant to get their voice heard. And those of us who aren’t completing cancer treatments can just be patient, be understanding, but importantly just be there for our loved ones.

Knowles, Kimarie. “Young Adults: Coping with Life After Cancer.” Smithl. Leukemia & Lymphoma Society, Apr. 2016. Web. 29 Apr. 2016. <http://www.lls.org/blog/young-adults-coping-with-life-after-cancer>.

McMahon, Andrew. “Singer Andrew McMahon on the ‘Lost Generation’ of Young Adult Cancer Patients.” U.S News and World Report. U.S News and World Report, 26 Oct. 2015. Web. 29 Apr. 2016. <http://health.usnews.com/health-news/patient-advice/articles/2015/10/26/singer-andrew-mcmahon-on-the-lost-generation-of-young-adult-cancer-patients>.

“I have a heart like a motor, and I can take more than you.”

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“I have a heart like a motor, and I can take more than you.” – Gerber, Max S. Introduction. My Heart vs. the Real World: Children with Heart Disease, in Photographs & Interviews. Cold Spring Harbor, NY: Cold Spring Harbor Laboratory, 2008. 2. Print.

Cardiac protection in youth cancer patients is something that many have focused their trials on for awhile now. Pediatric cardiologist Gonzalo Wallis, MD, from Charlotte North Carolina has been working on a new trial testing the effects of Dexrazoxane, also known as Zinecard or Totect, can have on protecting these young hearts while they are undergoing chemotherapy sessions.

Dexrazoxane is a cardioprotective drug that can minimize doxorubicin during chemotherapy treatments. The hope is that is can also minimize cardiac failure later on after the treatments have been successful in these children’s lives.

This study at the Carolinas HealthCare System’s Sanger Heart & Vascular Institute has been rather small, leading to minimal results thus far. However, they would love to grow the size of these trials as well as see the results in twenty to thirty years when these children have grown and lived out many more years of their lives after treatment.

 

Feel free to watch this video of Gonzalo Wallis, MD explain further…
http://www.medpagetoday.com/Cardiology/Prevention/56700

My Story: Sheila Crowe

IMG_1168I am the proud mother of a 21 year old daughter, Brenna, that has survived Hodgkin’s Lymphoma stage 4B.

Brenna was diagnosed in May of 2013. Prior to her diagnoses we were in and out of doctors with symptoms such as, unexplained fevers, night sweats, back aches, fatigue and the worst, ITCHY. She was prescribed lotions for the itch, sleeping pills to help with the itch, antibiotics, all that never worked.

She was in her last semester of college in New York. When she came home for the summer, we went to a hematologist, 3 tubes of blood and 20 minutes later the doctor came in and told us the words you never want to hear “blood cancer” I was instantly sick to my stomach. Brenna was speechless and relieved at the same time to know she did have something wrong.

The journey began, tests, scans, and a biopsy to confirm the type of cancer it was.

The day came, Chemo was to start, 6 months, bi-weekly of ABVD. All I did was cry and wanted to take all this away from my daughter. All I could do was be there every step of the way. I would cry when her back was turned and put on a good show in front of her.

Her first treatment went well no vomiting and very little nausea, tired was about all.  After her 2nd treatment a scan was done 99.9% cancer free!!

IMG_1517Brenna did on line classes for her first semester of her senior year so that she would be able to graduate with her class. She never missed a beat, went to concerts, hung with friends and still had hair. The hair…this was the most devastating factor of cancer for her, losing her beautiful, long black thick hair. She cut 7″ off to alleviate some of the weight. By her last treatment still had some hair, it was very short  and thinner like a boy’s cut, but she had hair.

We ran into a few obstacles with the picc line she chose to have instead of a port, but it was resolved within a week.

All of a sudden the 12th treatment was here. December 19th was her last treatment. Then the last scan..100% cancer free!!!

Brenna never once felt sorry for herself nor did she ever say “Why me?” She did a journal on YouTube and so many people followed it. They would contact her and she told them her successful story and gave them hope. She did not let cancer put a hold on her life.

Brenna went back to college in January and is graduating May 23, 2014 with her class as a communications major!! I tell her all the time “Thank God I had you to go through this with I would never of been able to do it.” She started out with a positive attitude and ended treatment with a better one.

Never look back, always keep positive, millions of people kick cancer’s butt and you will too!

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-Written by Sheila Crowe. Light The Night Team Captain and proud mother of a soon to be college graduate and Hodgkin’s Lymphoma Stage 4B survivor.

My Story: From Scared to Strong

Kim Dippo Cancer FreeOn June 9, 2011 I went to a local hospital for a routine biopsy.  I’m not sure if it was because I was 18 and naïve, or because I was so oblivious to anything medical more than a stuffy nose, but I honestly thought I would be in and out in 10 minutes.  When I saw the consent forms for surgery and anesthesia, my eyes filled with tears.  I remember it like it was yesterday; I ran to my dad and asked in sheer panic, “I’m having SURGERY?” My parents tried to calm me down and reassure me that this was routine and it wouldn’t take too long, but coming from a girl who had never even had the flu, my anxiety was overwhelming.  I continued to sob until the anesthesia kicked in, and that was that. 28 hours later I awoke in the ICU at Massachusetts General Hospital in a complete fog, after they found the tumor was pressed against my windpipe causing it to collapse.

It took a while before I realized where I was or what was happening.  I must have asked my parents 20 times what time it was, where I was, and if they called Nancy to tell her I couldn’t babysit that weekend (dozing off between).  I had been sedated for over a day, and coming out of that is something I still look back on today and laugh about.  I remember a nurse asking if I wanted to brush my hair, where I proceeded to miss my head completely and give my cheeks a nice brush instead.  When I finally came to consciousness, fear started to set in.

The doctors came in and that’s when my life turned upside-down; I had cancer. T-cell Lymphoblastic Lymphoma to be exact.  Once again, I don’t know if it was me being naïve or my lack of experience with something so terrible, but my biggest concern was if I was going to lose my hair.  I had no idea the effects of chemotherapy, or that I would lose all of my muscle and the ability to get through my daily routine without help.

They told my parents they had to leave for the night, and if I was stable by the next day I could move up to an actual room in the hospital.  My dad, knowing how scared I would be there for the first time in a hospital all alone, told the nurses he was staying.  He didn’t ask- he told them.  He spent the night sleeping in a chair in the corner of the room, being woken up every half hour to me freaking out about a noise from the million machines I was hooked up to.  I did not sleep a wink that night.  I was scared, confused, and couldn’t seem to put the pieces together or answer the question of, “Why is this happening to me?”

The next day I moved up to an actual room. I was unable to walk without help, since my legs were unbelievable weak.  When my friends and family came to visit, if I was able to use a walker to walk them back to the elevators a few hundred feet away, it was a good day.  I spent the next 5 days in the hospital, making my stay a grand total of 6 days.  There were many sleepless nights, since I was being woken up every couple hours by nurses for my chemotherapy or my shots.  A thousand thoughts ran through my mind night after night: Was I allowed to move in my sleep with the IVs in my hand?  Was I going to be sick from the chemo? When can I go back home? What if I need a doctor when I’m at home, and they aren’t there at a press of a button anymore? Are my family and friends worried, because I don’t want them to be worried about me?  I’m not going to die, right?

My dad stayed by my side the entire time, and my mom came back each day for the whole day.  We laugh thinking back, because there was one day my dad left me.  I decided I was ready to take a shower, so he went to get something to eat.  He came back to about 5 or 6 nurses in my room with an oxygen tank because I blacked out and started to hyperventilate when I stepped out of the shower.  Needless to say he didn’t leave my room again unless someone else was with me.

Kim Dippo Last TreatmentIt took months to gain my strength back.  I barely left my bed because I was so frustrated.  My parents had to beg me to walk down the hallway, or to the mailbox, just to get my strength back.  Something so simple was so exhausting for me.  One day I was home alone and dropped my bowl of spaghetti on the floor.  I bent down to pick it up, and I was unable to get back up because I didn’t have the strength in my legs.  I sat on the floor and cried (both because I was stuck, and because I wasted perfectly good food).

Despite the challenges faced in the first 6 months of treatment, I wouldn’t change one second of it.   It has made me stronger than I ever thought possible.  Who I am today is a far better version of myself than I ever was.  I am happier.  I am more grateful.  I am more empathetic and compassionate.  I am stronger.

 

Don’t let cancer take away your freedom.  Fight with everything you have, and become better because of it. Cancer is a terrible and devastating thing, but it doesn’t have to be all negative.  Overcoming something that makes you so weak is the best feeling in the world.  I would not change a thing.  Cancer made me who I am today- and who I am today is fearless and strong.

-Written by Kim Dippo. 2013 York Honored Hero, Light The Night Walk participant, college junior, and T-Cell Lymphoblastic Lymphoma Survivor.

Life after cancer, a childhood cancer survivor looks back at growing up with stomach aches

Sally Ekus

Twenty five years ago I was sitting in my bedroom playing doctor with my dolls. My grandmother, who was babysitting me that day, overheard me say to my dolls that they had to take their pills or they were going to die.

At the time I was going through intensive chemotherapy for my ALL diagnosis. The treatment was so rough on my little body that the doctors decided to give me a break and take me off all meds. Apparently my unconscious mind was scared by this and in my pretend play with my dolls it came through. My grandma told my parents what she heard and they immediately began giving me a children’s multivitamin each morning so I would have a pill to swallow. I was so young; I didn’t know the difference between a vitamin and prednisone.

Fast forward to this past August when I celebrated 25 years cancer free.  For all intents and purposes I consider myself really healthy. This past October I completed my 3rd Team in Training endurance event. It is hard to believe that the same little body that was too weak to walk upstairs all those years ago has completed full marathons! Even more shocking is how much I thought I hated running.

Growing up I led a fairly normal life–considering. Once I was declared cured the doctors sent me on my way. I played sports, JV but still. I went out with my friends, and I went off to college. But when I got to college, stomach aches I had suffered my whole life rapidly got worse. The pain was so debilitating that at times I couldn’t walk to class and often in the morning I would get sick to my stomach.

Because of my medical history I had all kinds of tests done. Blood panels, full work ups, ultrasounds, and even a colonoscopy. I was barely twenty years old and had a colonoscopy, not fun! But every doctor I saw said I was fine. I started to question if it was all in my head; if the pain I was feeling wasn’t as bad as I thought.

Back when I was in treatment, there were few, if any, studies or even conversations happening around the long-term effects of chemo. How I was I supposed to know that the severe stomach aches I had all my life could be linked to the chemo my 4 year old body endured? It seems so obvious now, but 25 years ago all that mattered was that the cancer was gone.

It turns out that I have severe food intolerances and my body can’t digest many common foods. So far there is no way to know for sure that chemo directly caused these intolerances, but I wonder if anyone else out there has experienced something similar after going through intensive chemotherapy?

The list of the foods I must avoid is really specific in that I must avoid gluten, any dairy that comes from a cow (that means cream, milk, butter…you know the good stuff). I also cannot eat any chicken eggs, and I have to avoid all mustard. I mean who has a mustard allergy!?

As I have uncovered the foods to avoid, I have been tested for hundreds of food reactions.  It turns out my gut is really damaged and I had a reaction to every single food on the allergy panel. I remember getting the results and the nutritionist saying “Wow, no one has ever had even a low level reaction to every food” as if I had won some prize. It turns out recurring pain I have battled for what seems like my whole life may all be linked back to the same drugs that saved my life.

Believe me; I know how lucky I am to be alive. But the long-term effects of those toxic drugs need to be addressed. It is one of the many reasons I raise money for LLS. Funding research for life saving drugs is incredibly important, and so is funding research for long-term effects of drug treatments. Donor funding, Light the Night walks, Team in Training, Man and Woman of the Year and other campaigns from The Leukemia & Lymphoma Society are why I am alive today.

The quality of life after cancer is improving by the day. If you had asked me even 5 years ago if I would be writing about my food intolerances on the LLS Light the Night blog I would have said no.

I was focused on looking forward, trying to find new doctors who specialize in food intolerances, allergies, gut health. I didn’t think anyone noticed, cared, or that it even mattered what happens after you get the cured card.  It never occurred to me to look back, to request my medical files and start back at the beginning. But with the research improving the survival rates, quality of life and investments in less toxic therapies are more important than ever.

I still don’t know if I will be able to have children. I still don’t know exactly how to heal my body from the inside out. But I do know how lucky I am to have incredible care, doctors, and support. I know that the money we raise together is why the children going through treatment today, will be able to live happy and healthy lives tomorrow.

Thank you for listening to part of my story. Feel free to follow me on Twitter or Instagram for some creative recipe ideas.

 -Written by Sally Ekus. ALL survivor, Team In Training (TNT) alumni, Light The Night volunteer, and Society Connection co-chair.