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Remember Todd, our superstar?

He’s gotten yet another chance at life.

My name is Maria and I have been working at DKMS for over one year now. I will be writing about my hero, Todd, who some of you may have already read about.(Todd - in the orange shirt - is pictured with his younger brother and mother).

I met Todd in October 2007 at the marrow donor drive DKMS holds annually at the University of Missouri. He was the first patient I had the privelage of meeting. We bonded instantly. He was warm, kind, funny and overall, a down-to-earth, happy go lucky kind of guy. He also has a big heart, like the rest of his family, especially his cousin Julie, who has been by his side through his tough journey, and has been an advocate for marrow registration.

When I returned home three days after meeting Todd, I felt so blessed to have met a person like him. After everything he has been through he continues to remain strong and have such a positive outlook on life. He is my hero; a true inspiration.

Fast forward to the present. Tragedy strikes his family, yet again. Earlier this year, Todd developed an infection and began running a high fever. He had to be immediately hospitalized and undergo another bout of tests. Once again, Todd relapsed. This news was hard to accept for me, especially having been given the opportunity to bond with such an amazing individual. I was teaching him Italian remotely, as he always wanted to learn the language of love.

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Babies or Cancer

Would you choose?

Do you think you could choose? What if the life saving treatment also left you unable to have children?

Lindsay Nohr Beck founder of Fertile Hope doesn't think you have to. When she was diagnosed with cancer of the tongue she thought of cancer being temporary and infertility being permanent. So she set out to find someone who could help her store her unfertilized eggs before she started chemotherapy. And while she was able to get pregnant twice without ever using her stored eggs, it was a relief to know that they were available should she need them.

Erin Zammett Ruddy and her sister Melissa Zammett Gonzalez are no strangers to cancer or being a mother. Erin, a CML patient who takes Gleevac recently went off her medication to have her son Alex. Gleevac is a daily medication which keeps Erin's CML at undetectable levels, not taking it could have caused her cancer to return. At this time Erin is currently back on Gleevac and thinking about having another child with her husband Nick.

Erin's sister Melissa was diagnosed with Hodgkin's Lymphoma while she was seven months pregnant. Her only option was to start chemotherapy and deliver at 8 months. Her child is fine and even though Melissa has relapsed and had a stem cell transplant she is currently pregnant with her second child.

For these three women being a mother is something they put first but could you?

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How do they do it?

Parenting and having a Child with Cancer

I usually have a case of writer's block about once or twice a week when I sit down to write this blog. And then there are those days where ideas just throw themselves in front of me. Well, today is one of those days.
I take the M14 bus every morning on my way to work and today, between reading my book and listening to my ipod(what can I say, I must multitask) I noticed a man with his little girl in a carrier and little boy on his hip attempting to get them both on the bus. Perhaps it was watching his small struggle or that I am reading Baby Love or that a good friend just gave birth to her first child yesterday but something about the moment made me wonder about parents. Specifically parents of children who are diagnosed with a disease that requires lengthy hospital stays.

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My Friend Pat needs your help....

Vote for Him!

Who knew there were so many amazing people out there? We did!
That’s why we started the Energizer® Keep Going® Hall of Fame, to showcase all those people who have the same perseverance, never-quit spirit and positive attitude as the Energizer Bunny®.

The search for the winner of the 2008 Energizer® Keep Going® Hall of Fame is down to 10 phenomenal finalists. Help us pick the person who is most like the Energizer Bunny®.

The finalist with the most votes will join Cal Ripken Jr., in the Energizer® Keep Going® Hall of Fame. The winner will receive a $10,000 cash prize plus a $5,000 donation to his or her favorite charity. For every vote cast, Energizer will donate $1 to the Cal Ripken Sr. Foundation, up to $10,000. The foundation provides opportunities for underprivileged children to learn the sport of baseball.
Vote everyday until July 25th!

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Hope for Hailey

Asking for two miracles

Rick and Maria Kent are the proud parents through gestational surrogacy of Ryan and Hailey, who are now 2 years old.

When Hailey was 15 weeks old she was diagnosed with Acute Lymphocytic Leukemia (ALL) - also known as Mixed Lineage Leukemia (MLL).

While on chemotherapy Hailey relapsed and had an unrelated, mis-matched umbilical cord blood transplant in May 2007. She is home now but is having issues with graft versus host disease; this is starting to affect her kidneys.

Haily needs a marrow transplant.

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Remember Lisa?

We recently got a letter from our dear friend Lisa.

For those of you not familiar with Lisa’s story it all started back in 2007 right around the time most of us are eating Thanksgiving leftovers.

Imagine having everything to live for - two beautiful children, a loving husband, loyal friends and a job you love - and then finding out in a blink of an eye that you are suffering from a type of blood cancer and your only chance for survival is a marrow transplant from a complete stranger. This was Lisa’s story.

Lisa, a 41 year old mother of two young children, Michael, 5 and Alexandra, 3, was diagnosed with an aggressive form of Acute Myelogeneous Leukemia (AML) the day after Thanksgiving, on her daughter’s birthday. Once diagnosed, she was immediately hospitalized and went through several rounds of intensive chemotherapy. Unfortunately, the treatments were not successful and she wasn’t in full remission. It was now critical for Lisa to have a marrow transplant. Finding a donor match would be the only thing to save her life. A donor of Ashenzai or Eastern European Jewish descent would probably be Lisa’s best match.

Hundreds of New York City mothers who learned about Lisa are joining forces, sending out e-mails and organizing donor drives in Lisa’s honor.

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Leona Lewis lends her voice to DKMS

Bristish pop star champions efforts of DKMS and Pat Pedraja

"Not a lot of people know that leukemia is the most common disease children die of in the U.S. Most children and young adults can be given a second chance if a match is found. However, only 2 out of 10 patients end up getting the life-saving treatment. I think it's amazing that Pat, who is organizing donor drives with DKMS is being an advocate for bone marrow registration at such a young age, he is such an inspiration."

- Leona Lewis

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Miracles do Happen

Keane and Ethan

When you work at a marrow donor center you want miracles to happen everyday and sometimes you feel like all you feel is sadness and heartache. With each new person we talk about who needs a life-saving donor your heart breaks a bit because you know how hard it is to find a perfect match. I mean statistically speaking, how many perfect genetic twins can you have in the world? And, who are actually registered as a marrow donor? It used to make me wish that we were all born a twin, that way our perfect donor would always be right there. Well, that was until I heard about the Denke's and their twin boys.

Xander and Carrie Denke are quite possibly the happiest couple. So happy to be married and pregnant with twins. And even though delivery was rough on October 13th, 2006 Keane and Ethan were brought into the world. And even though they still had to spend some time in the NICU, their birth was still a wonderful experience for both parents.

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Giant Kids at Camp Kiwi

Sometimes the best things come in the smallest of packages.

Kids are a lot smarter than we often give them credit for. Giant Kids understands that.

They know that children with life threatening diseases struggle so hard everyday through medical exams and procedures to make it to their next birthday that they miss out on just being a kid. They miss out on the opportunity to play and to run, that being a child isn’t fun for them. Remember when you were little and it rained and you had to stay inside? Well imagine that everyday, and that’s the life of a child facing a life threatening disease.

Giant Kids tries to remind us that these kids are superheroes. They work with hospitals and families nationwide, to honor these little children for all they have been through. They host award ceremonies and try to make them feel as special as they are.

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Look Good Feel Better

I heart Heidi

As if perfection wasn't enough Heidi Klum has an amazing heart.
Heidi was recently at a press conference for DKMS Life and Douglas Cosmetics. DKMS Life is very similar to theLook Good Feel Better Campaign(LGFB) we have in the US. If you haven't heard of either organization, they host workshops to teach women with cancer how to put makeup on. I know it sounds vain but looking good does make you feel better. Perhaps all it takes is a fresh swipe of lipgloss or an extra coat of mascara but for those going through chemotherapy its usually not that easy to feel that confident in their looks.
LGFB hosts two-hour, hands-on workshop at comprehensive care clinics, hospitals, ACS offices, and community centers, local group programs are organized by the American Cancer Society, facilitated by LGFB-certified cosmetologists, and aided by general volunteers.Each workshop includes a 12-step skin care/make-up application lesson, demonstration of options for dealing with hair loss, and nail care techniques. Patients in various stages of treatment receive make-over tips and personal attention from professionals trained to meet their needs. They also use and take home complimentary cosmetic kits in their appropriate skin tones (light, medium, dark, extra dark) with helpful instruction booklets. Professional advice is provided on wigs, scarves and accessories. (Teen sessions also include social and health tips.) More than 50,000 individuals participate each year in small groups of five to ten, offering each patient a supportive circle, as well. Group programs represent the highest level of expertise available (the “gold standard”) in LGFB services.
So a big thank you goes out to Heidi Klum for supporting DKMS Life in Germany and giving something back.

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Meet Carter...Our Little Warrior

Michele Guest Blogs

Hello All!
My name is Michele, and I am relatively new to the Donor Recruitment team.
So far I have LOVED the several months that I have been at DKMS. DKMS is such a uniquely special organization. In fact, it would be very hard for someone NOT to be energized by its cause and ultimate goal: to get as many people as possible on the National Registry, and in doing so, increasing the chance that as many patients as possible can find their life-saving matches. Every person at DKMS works towards that noble goal in their own way.

(thats me Michele)
One of the real highlights of working here, and perhaps my favorite part, is that we get to interact and correspond with truly special people on a daily basis. Donors in general are extraordinarily special people. They each want to contribute to society in this very powerful way and they all want the opportunity to save a life. Donors are virtually selfless.
Meeting and getting to know patients is extremely rewarding and fulfilling as well! Adults and children, who have suffered and continue to suffer with leukemia and different blood diseases and cancers, are determined fighters! The human spirit is remarkably resilient, and our potentially limitless capacity for resiliency is evident in so many stories and in so many patients that DKMS gets to know. One such patient that DKMS is looking forward to meeting is Carter Brotherton.

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DKMS is Driving for Donors with Pat

Children’s Hospital of Philadelphia

As you know DKMS is Driving for Donors with Pat. Well , this past Friday I got my first taste of what that really means.

"It is a very cool story how we ended up at the Children’s Hospital of Philadelphia (CHOP) today to do our marrow drive! A couple of months ago we got an email from a lady named Chris Reilly who is the mother of a little girl who is being treated at CHOP for Leukemia. Chris wanted to do something in honor of another patient from the hospital who had passed away without finding a matching marrow donor so she searched the internet and found Pat! She emailed us wanting to set up a drive and we were excited to plan one with her! CHOP is known as one of the best hospitals in the country to treat kids with a number of diseases but what interested us is how successful they are with kids with Leukemia who need transplants. We had been trying to find someone at CHOP to do a drive with us since last year with no luck! It is really hard to get to the right person at a hospital or business in order to plan a drive and we really count on "insiders" to help us!" From the Driving for Donors Blog written by Claudine Andrews

While Claudine and I had spoken previously on the phone and I met her once in person , this drive was a much different experience all together.

To start it off , I met Pat’s grandparents Gordon and Sharon, quite possibly the cutest grandma and grandpa ever, and so dedicated to the cause. Sharon just retired a few weeks ago and is already on the RV recruiting marrow donors in Pat’s honor. And Gordon’s "hats off’ gesture will have a smile on your face all day. And their dog is the sweetest thing and practically begs you to rub her tummy. Gordon and Sharon are the swift kick in the butt that gets people motivated to register. And they make sure the RV is well stocked with both regular and Diet Coke!

Claudine came next. Most moms would have just shrugged off their child’s idea to drive cross country and register people as marrow donors while living in an RV. Not Claudine. She drove up to CHOP in the middle of a huge rainstorm with her youngest son Tucker in tow, disregarded her soaking wet jeans and the fact she hadn’t had a real meal all day and jumped right into registering people. And Tucker, well he played with his cars and Claudine’s laptop, you barely heard a peep from him all day.

What about Pat? Well I didn’t get to meet him that day but he will be in NYC on Wednesday when he is registering donors at Medgar Evers College with the rest of the Driving for Donors gang/family.

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DKMS rings the closing bell at NASDAQ

Mario Cantone and Katharina Harf preside over the closing bell

DKMS had a late opening the day after the gala and much to our surprise and invitation to ring the closing bell for the NASDAQ on Friday May 9th, 2008!

We were so excited to be invited and even more so once we got there and saw this

Somehow that made it seem so official!

Once we got there we all made sure to take pictures(which you can find on Flickr) and really take in how important this event was. Not only did we receive the honor of ringing the closing bell, we got to do so with Mario Cantone who hosted our event. Both he and Katharina Harf, Executive Vice President of DKMS Americas gave a call to action speech about the need for marrow donors which was projected on the NASDAQ screen in Times Square.

Last week was by far the most eventful week we have had yet and I can only assume that things will just continue to go up from here.

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Linked Against Leukemia

2nd annual Gala to Benefit DKMS Americas

It was a moment two years in the making. Kenzie Grant met Magda Boysen, her life saving marrow donor.

It was such an important moment not only for me but for the hundreds of people that night who witnessed a miracle. This little girl would not have been there if it wasn't for Magda, a women from a small town in Germany who decided six years ago to commit herself to the marrow registry. Because a stranger made one small decision six years ago, a family's life was saved.

I knew it would be an emotional moment but I don't think I was prepared to watch this little girl change people. She was able to touch so many lives that night. In that one moment. I hope that when she grows up(and she will thanks to Magda)she looks back on this moment and knows that she is such an important person to everyone who was in that room that night.

In the words of Mario Cantone, last night's MC "GO GET SWABBED B*TCHES!"

To enjoy more pictures from the Linked against Leukemia Gala, benefitting DKMS Americas head over to our Flickr page.

DKMS and Howcast Team Up to Show You How To Register To Donate Marrow

Sign up as a marrow donor today!

Have you ever wondered how to boil the perfect egg? Or, how to tie a tie? Or, how to register and donate your marrow?

Our friends over at Howcast certainly have. Howcast.com is a brand new online video site showing how-to videos you'll actually want to watch. We here at DKMS liked their style, so we teamed up with Howcast to shoot two very fun yet very informative how-to videos showing folks How To Register To Donate Bone Marrow and How To Donate Bone Marrow.

While these videos officially go live tomorrow (in time for our fundraising Gala), I couldn’t help giving you a sneak preview of them today...

Check them out and spread the word: email these videos to your friends and family. Its easy to do, just click the envelope button on the player below, enter in a few email addresses, add a quick note and hit Send. Of course, if you haven't already done so, .

How To Register To Donate Bone Marrow

How To Donate Bone Marrow

If you like what see, be sure to visit Howcast.com and let them show you how to do almost anything.

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Christine Guest Blogs

Christine, our intern from NYU

Hello There,
My name is Christine Johnson and I am just about to complete my first year at NYU. Last semester, my good friend Chere See, an international student from Singapore, started a DKMS club at NYU. In her senior year of high school, she helped organize a donor drive that registered over one thousand people in Singapore’s national registry. So, when she came to NYU, she wanted to continue here what she had started overseas. When I saw her passion, I could not resist joining the new club. We are small (but mighty!), and we work closely with DKMS Americas. On February 8th, DKMS @ NYU held its first donor drive in Goddard Residence Hall where we registered 54 students. Since then, we have held drives at Brittany and at 3rd North Residence Halls. Total, the club has helped register 131 students and we hope to up that number next year! Recognizing that it costs DKMS $65 to register each donor, we also wanted to start fundraising. We got our hands on some really cool new NYU sweatshirts (three different kinds) and began selling them at drives and other NYU events for 40% off of the bookstore price. We have raised almost $300 so far.

I met Ellie and Maria at the first donor drive. Ellie let me watch ‘How I Met Your Mother’ on her iPod, and I knew then that this organization was pretty awesome. About a week later, DKMS sent out a Facebook message asking for an intern. I couldn’t turn down the chance to work with such amiable people. So, I interviewed and got the job. I am now a Consultant with DKMS Americas. My responsibilities run the gamut, and I do everything from assembling registration kits to helping at donor drives to guest blogging. I love working here and getting the chance to be a part of an organization whose mission it is to save lives everyday!

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Are you Doing Something?

DKMS is Driving for Donors with Pat

“One Child's Dream / Driving For Donors was started by 11 year old Leukemia patient Pat Pedraja. Pat found out that so many people with Leukemia and other blood disorders are dying because they can't find bone marrow donor matches in order to get a transplant. There is a critical need for donors (especially minority donors) on the National Marrow Registry and most people don't know how easy it is to join the Registry. Pat set out to raise awareness about the need for marrow donors and started a National Marrow Drive to add 2007 donors to the National Marrow Registry. Pat and his family drove across the country in an RV, to 32 different cities in 3 months and held marrow donor drives. There is a fee for tissue typing to add donors to the Registry so Pat raised over $140,000 by selling ad space on his bald (from Chemotherapy) head! Pat added over 5500 donors in 3 months and is continuing doing marrow drives, raising money and promoting awareness about the need for marrow donors.”

Pat is now 13(well it will be official on Friday) and continues his fight to register marrow donors and this year DKMS is joining his team. This summer DKMS will go “on tour” with the Driving for Donors RV and will recruit marrow donors nationwide. But right now he is on a 5 day bus tour of the Southeast with the Do Something Dirty Hands Caravan, be sure to check out his blog for constant updates about Pat and the Dirty Hands Caravan.

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Todd our Super Star

my hero

I don’t like to say that I have favorites when it comes to patients but if I did, it might just be Todd. He is one of those people that has the ability to make you laugh the moment you meet him. Todd is a leukemia survivor who received a marrow transplant from his perfect donor May 2007. Unfortunately, Todd recently learned that he needed more marrow cells from his donor and is awaiting another transplant.

Todd’s transplant story doesn’t sound that special at first and you perhaps may be thinking that he is my favorite because he is a cutie but actually I am quite inspired by him.

Shortly after Todd was diagnosed with leukemia, DKMS got a call from his family saying that they wanted to register marrow donors to increase Todd’s chances of finding his perfect donor. So while Todd was going through one of the most difficult times of his life, he was thinking past himself and recruiting marrow donors for the national registry. And even when he found his match, he continued to register donors. In the past year and a half Todd has been able to register over 3,000 life saving marrow donors. And even with the recent news that he needs more donor cells, Todd continues to be good humored about the whole thing. He even created a group on facebook so his friends can submit ideas as to how he should style his hair before he loses it. That’s just the kind of person he is. And we wouldn’t have it any other way

Alina, Todd and Katharina

Registering marrow donors at the largest blood drive in the US at Mizzou University

Maria, Todd and Andrea

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