Tag Archive | "DKMS"

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Playing Willy Wonka in America for a week for the German man who saved my wife’s life with bone marrow

Posted on 21 November 2016 by Nestor Aparicio

Now that it’s taken me a few days to recover from my mystery surprise vacation, it’s time to come clean on how all of the elements of the #NielsInTheUSA tour came together during his epic, whirlwind week of travel across the continent in search of Dirk Nowitzki.

The more we posted pictures from various places and with many friends, celebrities and people involved in Jenn’s fight for her life in battling leukemia, the more questions folks had about the journey.

All of it was a secret for him. It was designed that way because he told us he loves surprises. It was also his dream trip to America – the first time he’d traveled outside of Europe.

It all began with his initial letter, which we received on August 7, 2014 – just 42 days after he anonymously donated his bone marrow to Jenn from Germany that saved her life on June 26, 2014. Read the letter here: http://wnst.net/wnst/jennstrong-receives-the-greatest-life-and-love-letter-ever-written-from-germany/

WARNING: If you do not click on the above link and read the letter, you’ll miss the whole point of everything you’re about to read and you’ll never understand what you witnessed in pictures earlier in November. Please read it before you proceed…

(Yes, really!)

You’ll be glad you did…

***

German law states that donors must wait two years before they can be introduced to a survivor. We knew in August 2014 that Jenn would have to survive and thrive for the next 22 months in order to meet him.

As many of you know, Jenn’s leukemia returned last September and she needed her still-anonymous initial donor to once again give his lymphocytes to save her life on Nov. 19, 2015. This was our best shot to cure her cancer through an awful process known as “graft vs. host disease,” which she has spent much of this calendar year experiencing most of the gruesome aftershocks of her survival last winter.

On the afternoon of June 30th, we received an email from our John Hopkins transplant coordinator with the name of the angel who saved her life.

For two years we only knew that he was male, from Germany and 21 at the time of his donation of bone marrow to save a stranger’s life in America. All he knew was that it was a 41-year old woman in America he was trying to save with his blood.

His name was Niels Domogalla, now 23, and he lives in Witten, Germany. Despite having his email address, Jenn and I dove onto the internet and she found him on Facebook within 30 seconds.

She friended him. I friended him. We both began to write short letters of introduction but before we could finish them he had already friended us both back and had commented on our walls.

It was 4:30 in the afternoon in America. It was 10:30 in the evening in Germany.

And, so, a unique friendship was berthed.

And what, exactly, do you say to a person who saved your life?

 

***

 

It didn’t take us long to realize that this was a special and unique young man in Germany. First, he really was concerned about the quality and the grammar of his English. He speaks parts of four languages and his English is about 96% perfect, which is better than …

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Deutschland files: Miracles, matches and our mission to save more lives on our #JennStrongGermanyHero tour

Posted on 08 September 2016 by Nestor Aparicio

This blog was written because so many of you wanted to read more or know more about our #JennStrongGermanyHero journey to Deutschland – a memorable trip to meet the young man who saved my wife’s life twice on the bone marrow registry.

We must admit, it was as “unique” of a meeting as we could’ve ever imagined.

His name is Niels Domogalla and, as we’ve now learned, he’s quite a young man. We are welcoming him to Baltimore on Nov. 12th for his 24th birthday to honor him and throw a party to celebrate his gift of life to Jenn. We spent three days with him and his family in several towns in Germany last week and we were thrilled to have beer, chat and laugh with a real “hero” in every sense of the word.

The video of Jenn meeting Niels somehow got viral over the weekend and more than 200,000 people have seen it since last Friday morning when I posted it from the DKMS headquarters in Cologne.

I can’t watch it and not cry but I still watched it every night in Europe and saw all of your comments. I sat in that hospital for 153 nights and watched her battle death with every ounce of energy so that she could “thank” him. When she was diagnosed the second time last September, she thought she had let him down.

We had communicated with him via Facebook messenger literally a few thousand times since June 30th when we found him. So, part of the “awkward” simply didn’t exist. That said, both were insistent over the eight weeks we conversed with him that they would avoid Skype or a phone chat. Clearly, he’s seen all of the videos and pictures and stories of our journey. He’s seen all of our work swabbing, the MLB 30-30 Tour and all of the anguish of her fight for her life. Over the eight weeks, he was very inquisitive about our story and much of it is public record – so we haven’t had to tell him most of the gruesome parts. He can see it.

About 72 hours before we got on the plane for Deutschland I realized that the German national soccer team was hosting Finland in a town to the west, near the Dutch border in Moechengladbach. The game was a friendly and tickets were readily available for $45. But it turned out to be the final match for German legend Bastille Schweinsteiger and it was only an hour drive.

(I’m not a speed junky but there is something very appealing about driving 95 miles per hour and I busted me some 165 kpm on the autobahn rolling toward Dusseldorf on Wednesday night at sunset.)

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The game was awesome. He loved it. And, if you read his letter, you know he loves the NBA and the NFL. We spent two hours on the square of Dom Cathedral in Cologne talking about 4-3 defenses and the use of nickel and dime packages. I used 11 beer coasters to show him various sub packages and offensive and defensive strategies used in the NFL. We also drank a lot of

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After 25 years of writing about “heroes” #JennStrong and I finally get to meet a real one on Wednesday in Germany

Posted on 28 August 2016 by Nestor Aparicio

I’ve been hearing about heroes in sports since approximately 1973. I’ve been writing and talking about sports since 1984 and every season a new “hero” comes along in every sport, in every city where championships are won and modern parades are held.

Today I will ask a pair of questions with some “deep thoughts” for the day:

What is a hero?

And what do you say to them when you finally meet one?

I’ve had a lot of time to think about what I’m going to write (and say) about my wife meeting the man who has (twice) selflessly saved her life via the bone marrow registry.

We’ve also talked about it on the radio this week. The (then) 21-year old man in Germany who twice saved my wife’s life asked the (very Freudian) question two summers ago when he donated bone marrow to keep her alive.

If you haven’t read his letter to her from 24 months ago, please read it. I called it the greatest letter ever written and I’ll stand by that.

You’ve probably seen some aspect of the fight of Jennifer Ford Aparicio, whom I married 13 years ago on a beach in Jamaica.

You’re probably reading this because you’ve witnessed her courageous battle for her life.

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Maybe you’ve seen a bald picture of her smiling? Or perhaps a picture of our beloved cat, Kitty, licking her face when she weighed 90 pounds? Maybe you’re a childhood friend of ours through Dundalk or Manchester, New Hampshire, or perhaps we’ve collected you on our journey in life.

Through two battles with leukemia, Jennifer Ford Aparicio has spent 153 nights in a hospital bed, surrounded by a ghetto in East Baltimore, wondering if she was going to see the next sunrise.

Vomit. Blood. Tears. Pain. Agony. Fear. Horrific hospital food. Incredibly brilliant doctors. Nurses with empathy and compassion that goes beyond words. And modern medicine that has miraculously kept her alive through two heinous battles.

My wife has stared down death on the absolute end of the plank and persevered. She is lucky. She is strong. She is brave. She is incredible. She is grateful.

I am simply a witness writing about the greatest “comeback” I can possibly imagine.

#JennStrong has been back to work as a network engineer for almost 90 days and fighting with her insurance company (I routinely call them “heartless, profiteering, corporate pieces of shit” but you can call them Met Life) for six months. She has been dealing with all kinds of fallout ­ – physical, emotional, spiritual that I can’t even comprehend – from twice battling for her life over the past 30 months.

Here’s the current update:

Skin rashes. Tear ducts that no longer function and a scratched cornea. Bone fatigue. Weakness. Stiffness and pain in every joint. Lack of appetite. Lack of energy. Lack of life, even after surviving the battle for her life. She has napped every day since Sept. 30th of last year and still tries to find the energy she had before leukemia wiped out our normal quality of life and happiness in March 2014.

Meanwhile, her insurance has forced her back to working full time, even though her eyes haven’t fared as well as the rest of her body.

You notice how she looks.

She notices how she feels.

Some days are better than others. Folks say: “It’s good to see you.” She says: “It’s good to be seen.”

But this post-cancer recovery doesn’t ever seem to get any easier.

But, for one glorious weekend, this is a time of celebration and gratitude.

This story isn’t about her, but about him.

On Tuesday night, Jenn and I are flying to Frankfurt, Germany and on Wednesday afternoon, we’ll be two Americans eating Mongolian barbeque, watching soccer and drinking local bier with a 23-year old German man who selflessly, inexplicably and (then anonymously) saved my wife’s life on June 26, 2014 with a bag of bone marrow.

When her leukemia returned last September, he saved her life again on November 19, 2015 with another bag of blood – lymphocytes that were designed to bring on the graft vs. host disease that has made her so weak and frail in 2016.

Seriously…what do you say and how do you even comprehend such benevolence and generosity?

HE. SAVED. HER. LIFE.

T-W-I-C-E!

They are now genetic twins – DNA and science will tell you they are literally relatives from halfway around the world who’ve never met. If she left her blood at a crime scene, it would be identical to his blood. His engine makes her blood and keeps her alive.

Well, on Wednesday we’ll be having lunch and we’re going to try to figure out how to say “thank you” for her life and his generosity.

Just think about that for a moment? What would you say? How could you possibly say it?

A hug? Some tears of life? Some embrace of eternal gratitude? A beer? Some schnitzel and black forest cake?

My wife has been to hell and back.

Twice.

We found the man who saved her life on Facebook on the afternoon of June 30. He had no idea she was even alive. He has been extremely inquisitive. He speaks four languages, including English that’s better than most of my friends from Dundalk.

By now, he’s keenly aware of all aspects of her fight.

We don’t need to ask “why?”

We know why. He told us before we even knew him.

He saved her life because he could…

“I did this donation also out of deepest conviction. I didn’t do it because it’s highly regarded in society. No, I did this for you because I believe it is our assignment to help people when they need help the most.”

At the time, he was one of TWO people on earth who had the DNA match necessary to keep her breathing.

Now, we’re going to Germany to try to figure out the rest of the story. And how “angels” still exist.

I’ve been writing about “heroes” via sports for the last 32 years. I’ve been taking phone calls and chatting about sports “heroes” for 25 years.

Ray Lewis was a “hero” once. So was Joe Flacco. And Cal Ripken. And Brooks Robinson. And Johnny Unitas before that.

And blah, blah, blah…

The charity organization we’ve partnered with is called, There Goes My Hero – just like the Foo Fighters song. With your help, we’ve raised a bunch of money and awareness about leukemia and bone marrow transplants and the registry and asking you to take a lottery ticket on being a “hero.”

I think it’s appropriate David Bowie was inspired and wrote the song “Heroes” in Berlin, Germany.

We can be heroes just for one day…

On Wednesday when you’re having breakfast in Baltimore, I’ll get to finally meet a real hero in Bochum, Germany.

We’ll let you know how it goes…

If you want to meet him, we’ll be throwing a birthday party for him on Nov. 12th here in Baltimore. Hold the date. Come and meet a hero!

 

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#JennStrong receives the greatest “life and love” letter ever written from Germany

Posted on 07 August 2014 by Nestor Aparicio

Today, while on her usual visit at the hospital, my wife got a massive surprise. Jennifer Ford Aparicio (aka #JennStrong) received a letter from her donor. It came from her bone marrow transplant coordinator on three sheets of paper in 12-point type. The blanks indicate information that was literally whited out on the original documents to ensure anonymity. We do not know his name. We aren’t allowed to officially meet or exchange names for another 11 months.

This is the most poignant, amazing document I have ever seen. If you think it’s hard reading it, you should’ve seen me trying to re-type this to publish on my blog. Obviously, I might have to ask Mark Cuban or Dirk Nowitzki for a favor…

 

Dear Ms. “;”

Honestly, I don’t really know how to start such a letter. Maybe it is the best way to start by introducing myself as good as I can.

I’m a 21 year old man from Germany. I’ve got several sport activities which I very like. I really like soccer. I’ve played it for almost ten years in clubs. The first time I played soccer, I was a little boy and my father went with me to the football pitch. It was such an awesome feeling to play with other kids and have fun. I didn’t play very successfully, but if I’m honest, it wasn’t my intention to be the next soccer star. I just wanted to have fun. After some years and a few injuries, I decided to give up what I really love. Of course, it was a tough decision, but I had to take care of my health, so it was the only decision I could make.

I’m interested in basketball. The origin of basketball is your country! Of course as a German, I’m a huge  ______ fan, so it’s no wonder, that I’m also a “fan” of the _________. Are you also interested in basketball, or are you prefer another sport activity?

Now, I’ve got a few questions which I’d like to ask you. The first and for me, most important question is:

How are you feeling?

Did you overcome blood cancer, the pain and everything else which is included by this awful disease?

How did you get to know of the diagnosis “blood cancer”?

What were your first thoughts once you got the message of leukemia?

Have you ever doubted that you’ll survive?

What did you feel, when receiving the message, that there is a donor for you?

Of course, I’ll understand if you don’t want to answer some of these questions, because maybe they’re too personal.

Probably it is time to explain to you, why I did donate stem cells.

A couple of friends asked me “why do you donate for a person you don’t even know?”

The answer actually isn’t as easy as it looks like. Once I was in the hotel, previous and after this donation, I often asked myself the question. But if I’m honest, it’s complicated to describe. Sometimes it’s hard to explain with the words I know. Maybe it’s best to tell you how I anyway get into position to donate for somebody.

About two years ago, when I was in vocational school, there was a charity event organized by ____. I was asked if I wanted to sign up or registrate to the database of ______. I didn’t really think about what I was doing and potential consequences for me or other people so after a few minutes I was a potential donor.

My first thought was “Oh, you won’t get the chance to donate” but this thought should become a huge fallacy.

One Year after my registration, it was a Saturday, I came home from work and while I was having breakfast, the doorbell rang. I thought it could be the mailman, because it was the typical time in Germany for post. He gave me the usual catalogues of advertisement and one huge envelope. I was quiet fascinating and didn’t expect that this letter was for me. My mind noticed very quickly “Oh, it’s for you!” I saw the logo of _____ and something in my mind told me, that this letter could change a few things immediately.

While I was reading the first lines, I was shocked in a “special” way. Obviously, at this moment I realized that my name and information about me were remaining in the database of the ____. I really had to sit down for some minutes in my room and had to think about what just happened.

It was unreal to read that I could make a contribution to rescue the life of somebody!

The next weeks were quite a journey for me: I had to fill in a lot of papers about health issues, went to doctors, had a couple of calls from employees of the ____ and got also several letters.

One day I had to go to my family doctor, because I had to give a blood sample. This blood was sent to a scientific institute to check if I’m the right donor for you! My responsible official had already told, that could take a few weeks until I’ll get an answer.

Weeks passed, but at the end of May, I finally got a positive answer. I was snoozing until I looked up on my mobile phone and saw an incoming call. I’ve already recognized the number, because I got several calls from this number in the last weeks. It was the _____! Immediately, I was wide awake and listened carefully the woman on the phone. As she had asked me, if I would like to donate, I did not hesitate for a second. I’ll do it!

So a couple of days later I had to go to ______, because of pre-examinations to check if I’m completely healthy. The donation should start a few days after the check-up, but one day in the evening I got a call from the clinic where the donation should take place. She said the target date had to be postponed.

This was a strange feeling, because I worried a lot and asked myself what could be the reason for this delay. But after some calls on the other day, the worries didn’t exist anymore.

On the 24th of June I went to ____ again, but this time I stayed there two nights in an incredible hotel.

Next day was donation day! The breakfast in the hotel was impressive, but honestly I couldn’t eat as much as I’d like to, because I was too excited about the things which should come later that day.

At eight O’clock, it all began. Of course, I speculated a lot about how this day will look like and I also had a few doubts if I’ll get any pain or side-effects. But was so relaxed, I couldn’t believe it myself.

I lay there about three and a half hours. It sounds like nothing than boredom, however it wasn’t. I listened to music a lot and talked to one of the nurses for some time.

The feeling after donation was unbelievable! I couldn’t realize that I possibly saved a life. I had to wait about half an hour, because the doctors wanted to know if I felt good after this process. I didn’t expect that I’ll feel so good if I’m honest because when I was at the check-up they told me, you will feel like you ran a marathon. But everything was good.

In the evening I finally realized what I had done. If everything went well, I would save a life! A life of a human! The thoughts and the feelings which I have while thinking about it, are so unbelievable! After the donation, friends texted me “we are so proud of you – you’re a hero!” Of course, the support of my friends was amazing and just in the moments as I had worries about the things that will come. I felt a lot more secure.

But am I really a hero?

In my opinion I’m not a hero! Actually, I did something very special and maybe uncommon. Of course, everybody has his own definition of becoming a hero. For me a hero is a person who risks his own life to save a life of somebody whom he or she actually doesn’t even know. A soldier in Afghanistan is a hero! He or she puts his/her life on the line, just to create a little bit of freedom in a country where freedom never could exist. A fireman risks his own life to save a life or even more from people he actually doesn’t know everyday. But why do they do something like that? In my mind, those people do this out of deepest conviction. They don’t do it because they have to. No, they do it because they believe it is right to do it!

What does it mean to my situation?

I did this donation also out of deepest conviction. I didn’t do it because it’s highly regarded in society. No, I did this for you because I believe it is our assignment to help people when they need help the most.

But there is another reason why I did such a thing.

I told you previously, that I was admitted into the database of the ___ because there was an initiative at my vocational school. There was a guy of the same age and his little brother suffered leukemia, so he was looking for a donor for his young brother.

While I was listening to the story of his young brother, I asked myself what I would do for my little brother if I was in his position. I don’t know if you have children or if you are even married, but the thought that you may lose things which you truly love was beyond all bearing. By knowing that I could make at least one person much more happier pushed me a lot. A lot of people want to have so much money that they don’t know even what to do with it, they want to have a fast car, a huge mansion or even a yacht. But what you only wish is, that you can see your kids, play with them in the garden, see them growing up, just do what you want to do and not spending every second thinking about your disease. You just want to live your life! Happiness is one of the things you can’t buy!

I’d like to come to the end of this letter. I actually don’t know how to end such a letter, like I previously didn’t know how to start. But what I’d like to say: I also have to thank you! It may sound strange but I’m deeply grateful that I had such a chance to do something like that. Every time I’m upset, I think back on what I did and that you could be the happiest person on earth. And so I become very happy too. I wish you, your family and your friends all the best and that you will become the person you were before the disease, that you can do whatever you like to do, that your dreams and wishes you have become reality at some point.

Someday, I hope that I’ll get the redeeming message from you: “I’m fine!”

 

Your genetical twin!

 

 

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