Posted on 02 May 2020 by Nestor Aparicio
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Posted on 17 March 2018 by Nestor Aparicio
All Washington Caps fans are welcome to join us on Thursday, March 29th at Michael’s Café in Timonium as we welcome former Baltimore Skipjacks head coach Barry Trotz back to Baltimore County. We’ll be chatting at length about the Stanley Cup playoffs and the Capitals quest to win the goblet as we swab for There Goes My Hero and the bone marrow registry.
Along with our WNST.net Caps historian and blogger Ed Frankovic, I will be bringing out the tough questions for Coach Trotz and doing some hockey history with one of my favorite people.
The show starts at 7:30 p.m. and every year the stories of the old days in Baltimore grow taller.
And, yes, pictures like this exist.
I would encourage anyone who has followed our #JennStrong leukemia journey over the past four years to come out and take a few minutes to learn about how we’re trying to save more lives by getting more young people onto the DKMS bone marrow registry to assist blood cancer patients around the world.
As always we appreciate the sponsorship of Freedmont Mortgage, Cole Roofing, the Maryland Jockey Club and the many partners we’ve had over the years for There Goes My Hero. And we’re really looking forward to having some crab cakes and beer after the Orioles beat the Minnesota Twins on Opening Day. If you’re going to Camden Yards, drop by and see us afterward and meet Coach Trotz.
Rock your red and join us at Michael’s Café in Timonium and help us celebrate their 34th year serving those tasty crab cakes. Join us for a cup of that famous “split level” soup and a prime aged steak and a glass of wine on Thursday, March 29th.
And #GiveASpit and #PuckLeukemia.
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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…
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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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.
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.
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.
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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Posted on 04 March 2016 by Nestor Aparicio
Great news on saving lives and “An Evening of Heroes: Champions and Survivors” is set for May 19th
I got an email on Thursday afternoon from our friends and partners at There Goes My Hero with an update on our work from last year’s 30-30 MLB #GiveASpit Tour and our other Baltimore area swabbing events. I’d like to share it with you:
It’s very gratifying to see the fruits of our labor and the real, life-saving “scoreboard” that’s starting to mount with There Goes My Hero in just the first full year of our efforts to pay forward the incredible generosity of my wife’s 22-year old donor from Germany. We’re still a few months away from being able to meet the man who has saved Jenn’s life twice since June 2014, but we’re already generating the warmth and pride that comes with doing our part to help others in the future.
Last year, we honored Chuck Pagano, Dick Cass and Brenda Frese for their stories and the bravery of their families through the journey of saving lives on the Thursday before the Preakness. When the event was over, my friends and family and sponsors all asked if we were planning on making it an annual event. I always dream big but – honestly, how do you top that head table of heroes?
Pagano survived leukemia and has now coached my wife through two battles with the same disease.
Cass saved a college friend’s life with a kidney a decade ago.
And many are familiar with Frese’s son, Tyler, who battled leukemia for much of his childhood and is now a healthy, happy little boy running around chasing the Lady Terps on another March journey.
But I have since learned that inspiration is all around us. We just need to look for it!
When Jenn survived her first cancer battle, Ravens Director of Player Engagement Harry Swayne grabbed me in the hallway in Owings Mills. “Did you know James Trapp had the same battle as your wife,” he told me. Sure, enough, the Ravens special teams captain in Super Bowl XXXV was diagnosed with leukemia in 2010 and had his life saved by a bone marrow transplant from his sister, who was a perfect match.
Trapp is now the Assistant Director of Player Engagement for the Buffalo Bills and his head coach that day in Tampa is my WNST business partner Brian Billick, who bought part of our company to benefit the Living Classrooms Foundation. I knew we had the foundation of something special if I engaged some of his teammates from that 2001 Super Bowl win.
Back in August, I saw John Harbaugh and Billick together on the field in Owings Mills as the old championship coach was addressing the newer championship coach’s team and I saw them embrace. I’m pretty sure the two have never been publicly seen in the same place at the same time. And they certainly have never been engaged in that kind of setting and forum to compare and contrast their mutually loved Baltimore championships.
Three weeks later, Jenn and I saw this on HBO’s Real Sports:
I reached to Ma’ake in January, once my wife was getting better after spending most of three months in Johns Hopkins fighting leukemia again, and he and his brother are excited to be joining us on May 19th the Baltimore Harbor Hotel to raise awareness for There Goes My Hero.
By the way, Ma’ake said that Dick Cass was one of the first people to call him to give him some comfort that he’d be OK after the procdure to save Chris’ life.
Then, there was the call to Pittsburgh Steelers head coach Mike Tomlin, whom I’ve strangely befriended along life’s twisted highway. I wrote about it when I did a mini-series on our 30-30 MLB #GiveASpit Tour last summer. You can read my whole “back story” with Tomlin here.
Tomlin text me back immediately: “I’m two feet in…”
He then mentioned something about needing security. LOL!
So, on Thursday, May 19th we’ll all gather – fierce foes on the football field and the stands but united for an evening of civility to discuss the journey and paths of these six men: coaches, heroes and survivors. Obviously, the Pittsburgh vs. Baltimore rivalry will set a backdrop. But remember: there’s a story of a Raven saving a Steeler on stage with us, a brother giving a kidney to save a brother’s life. And a sister who saved a brother. And the audience will be peppered with people like my wife, who’ve had their lives saved by complete strangers.
That’s what this is all about!
I hope you join us and bring along some friends for “An Evening of Heroes: Survivors and Champions.
We hope to make this an annual event to benefit There Goes My Hero every third Thursday of May.
If you are a business owner, I’m sweetening the pot with a free month of gold-level advertising on WNST.net & AM 1570 for all local shops who buy tables.
And if you have any questions or need me: firstname.lastname@example.org always finds me via email. Save the date and help us save more lives via our friends at There Goes My Hero.
Comments Off on Great news on saving lives and “An Evening of Heroes: Champions and Survivors” is set for May 19th
Posted on 15 February 2016 by Nestor Aparicio
“I DON’T KNOW IF I’M GOING to make it,” she told me late one night.
It was the week before Christmas. I had been out at various events with our WNST sponsors and listeners for the holidays doing canned food and coat drives. She had been in and out of the hospital for several weeks after the initial 48 days during October and November. When friends and concerned listeners were asking, “How is Jenn doing?” I’m not sure that many really wanted to hear the truth amidst pretty lights, shopping, Santa and family traditions.
Eight weeks later, I can tell you that it wasn’t going well amidst the yuletide cheer and egg nog. From my view, it was awful. I can honestly say that I thought she was going to die. She was getting worse every day, literally disintegrating in front of me. But all I could say to her was: “Don’t talk like that! You’re going to make it. You’re going to get better!”
My wife has now been battling this insidious, rare leukemia through two wretched trips and 23 months.
Seven weeks ago she thought she was going to die. And, somehow, through some kinda miracle and a lot of prednisone and good fortune and amazing doctors and a donor who has saved her life twice, she’s now walking the earth cancer free, healthy and in remission.
We are blessed with good fortune even though this has been the bumpiest of any ride I could’ve possibly imagined two years ago when our lives were normal and joyful.
On December 22, her doctor admitted her back into “The Hotel” at Johns Hopkins after several weeks of agony and awfulness. She hadn’t eaten much of anything since before Thanksgiving. We were led to believe the most common form of graft vs. host disease would come via a skin rash. Instead, hers attacked her liver and caused her the worst malaise I’ve ever seen a person go through.
She was weak, de-energized, uncomfortable and getting worse by the day. On December 23rd she had an uncomfortable second day in the hospital and a terrible evening. And, suddenly, on the morning of December 24th she began to eat. First, it was some oatmeal. Then, she sent me out for a pizza after noon. Then, there was fried chicken and biscuits on Christmas Eve – mainly because that was the only food we could find.
At some point, I’m going to write a massive missive about what a disgrace “hospital food” is because me bitching inside the facility didn’t do much to move the needle.
It wasn’t easy spending Christmas Day together in a hospital room but at least we were together and it was the first day that she really turned the corner on survival. On December 30th she came home – for good, we hope – and has been eating egg sandwiches and walking on the treadmill almost every morning for six weeks.
Twenty three months ago – on March 20, 2014 – a team of doctors walked into her hospital room and told us that she had leukemia. Now in February 2016, she has spent 132 days in the hospital with two very separate and distinct battles with the same gruesome blood cancer.
Our now 22-year old angel donor is out there somewhere near Cologne, Germany. We expect that we’ll be able to find him on or around June 26th, which is the two-year anniversary of the first time he saved her life with a bone marrow transplant. He saved it again with a donor lymphocyte infusion on Nov. 19th.
I could write pages about what I’ve seen and what I believe and I already have if you’ve been reading. Many of you have followed our #JennStrong and #JennStrong2 journey and have inquired recently as you’ve seen her dramatic progress.
Last week, many sports friends in media and the football world all passed by my table by the dozens on Radio Row at Super Bowl 50 in San Francisco with the same question:
To be honest, I haven’t written an update over the past few weeks because I didn’t want to jinx or misrepresent the incredible progress she’s made since the beginning of the calendar year. What do you write when you witness such a miraculous turnaround from what felt and looked like gloom as recently as Christmas Eve?
Jenn’s blood is as strong as the healthiest among us. As a matter of fact, she has more red blood cells than most of us. Her liver numbers are now in the normal range. Her immune system appears to be functioning very normally. She’s on a handful of drugs but nothing compared to the 30 to 50 pills she was taking in any given day two months ago.
So, where do we go and what’s next?
Because she’s still on some immune-suppressing drugs to continue to manage and combat her GVHD, she’s laying low and staying away from most human contact just because of germs and the flu season. There’s no need to take on extra risk in freezing temperatures but the doctors want her to integrate back into “the new normal.”
She hopes to go back to work slowly sometime in the late spring. Her employer, Verizon, and her insurance company have been incredibly kind, patient and thoughtful during this second journey that took her to the brink.
Her hair is coming back more slowly than she’d like but she’ll be back to the pixie Mia Farrow circa-1968 look in a few weeks. She’s eating, sleeping, walking, talking, cooking, baking and watching a lot of junk food television as she gains strength and weight. More than anything, she missed our cat Kitty so much during her months trapped at the hospital. So, she’s getting reacquainted with our feline as well.
It’s weird. There is no “finish line” with cancer. There’s only daily gratitude and one more day.
Could it come back? Sure…of course it could. The doctors don’t seem to believe this is very likely on a statistical basis.
She is now a two-time cancer survivor and leukemia warrior.
She is the real beast mode.
I suppose my ongoing life lesson in all of this is to live life to its fullest. Why do I go to see Bruce Springsteen so often? Because I saw Glenn Frey die last month and you just never know…
For those of you who want to support us, we’re planning a massive event on Thursday, May 19th to celebrate her recovery and survival and to honor several members of the Baltimore Ravens and Pittsburgh Steelers. The event will benefit There Goes My Hero, a local survivor-based group of leukemia heroes who twice have come to my wife’s bedside with aide, support and wisdom to overcome this life-threatening disease.
Hold the date!!!
I’ll have more details later in the week but if you want to spend a wonderful evening with some great friends and get some Super sports inspiration, this will be an amazing way to kick off Preakness weekend.
At that point, you can even hug #JennStrong!
We’re very confident she’s going to be alive and well on May 19th. That’s far more than we believed or could’ve hoped for on December 19th.
As another Valentine’s Day has come and gone, we just want to remind you to appreciate your lives, your love, your time and your place on the planet.
We’ve been to hell – but we’re coming back – and a lot quicker than we could’ve imagined.
Jennifer Ford Aparicio is coming back to life.
We’re very grateful for your support and we hope to say hello to all of you who have cared enough to follow our journey this spring.
Thanks for the support. Keep the faith!
Love from Nes and Jenn at the Inner Harbor
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Posted on 31 December 2015 by Nestor Aparicio
“And we can break through
Though torn in two, We can be one…
I, I will begin again”
New Year’s Day
WHEN SHE CHECKED INTO THE HOTEL last Tuesday – and knowing she was going to spend a dreadful Christmas holiday in a hospital bed – I was more concerned than I’ve been at any point in this almost two-year old leukemia journey.
Jenn was frail, gaunt, blank-faced and hadn’t really eaten anything of substance in three weeks.
Many of you have asked, inquired politely or simply followed this second trip into the gruesome world of cancer for my beautiful wife, Jennifer Ford Aparicio. We are eternally grateful that you care. But sometimes it has been hard to express how we’re feeling, especially when I’ve bumped into folks in the real world who ask “How is she today?” or the more familiar John Harbaugh refrain: “How’s our girl doing?”
As I wrote when this second cancer journey began in late September, sometimes you really don’t want to know how she’s feeling.
We’re doing our best to learn about leukemia, bone marrow transplants and graft vs. host disease as we go, and give you the most accurate information as we know it so that our friends, family and loved ones understand the reality of her path. Writing about it here also gives us a chance to tell the story once – so that we don’t have to do it a thousand times as folks ask one by one. As you’ve read, it’s very complex and there’s no elevator ride timetable that can accurately portray what’s been happening to her during this battle.
She’s home now after nine more days at The Hotel, resting and recuperating. The war is not over – we know better than to be overconfident – but there’s a legitimate chance that we may have finally fought our final battle before returning her to safety and a cancer-free future in 2016.
After her leukemia returned on September 29th, we were told in early October that a series of things needed to happen:
She needed to get into the hospital for chemotherapy to clear out the cancer and then hope that her initial donor, a 21-year old man from Germany who saved her life on June 26, 2014, would agree to send more lymphocytes to save her life again. If not, she’d need to go back to the bone marrow registry for a new bone marrow transplant from another donor.
Just 22 months ago, there were only two perfect matches for Jenn on the international registry. Now, there are NINE. It makes us feel that our 30-30 #GiveASpit Tour this summer at Major League Baseball parks and many awareness and bone marrow donor drives are working all over the world.
Sure, there were setbacks in October and November. And there was plenty of illness in December. Her appendicitis has somehow calmed down. Her blood sugars, volatile for a period of time, have normalized. Her appetite, all but gone for long stretches, is now slowly returning even if her stomach has shrunk. On Tuesday night at the hospital she said, “I’m feeling kinda hungry but I’m really full.”
Yes, many things we’ve seen and heard haven’t made sense on the long, strange trip.
We don’t ask “why?”
You can’t judge it when you’re living it.
On November 19th, her German donor/angel sent another bag of blood that set off the graft vs. host disease that the doctors were looking to ignite a cure for her cancer. Earlier this week, via a painful liver biopsy, her doctors confirmed that her extreme illness over the past month was indeed GVHD. Her donor cells attacked her body – as intended – and hopefully, attacked the leukemia that was looking to kill her.
She’s on a massive amount of steroids that will probably create their own sets of issues and side effects.
She came home on December 30th, just in time to see the ball drop and if this goes well there’s a real chance that we might never see another overnight on the 5th floor of the Weinberg Center at Johns Hopkins.
I’m obsessed with keeping her alive.
I’m focused solely on her surviving this nightmare.
Every single day, every single decision over the past 100 days has been about keeping her …
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Posted on 24 December 2015 by Nestor Aparicio
Yes, the most beautiful girl in the world is back at The Hotel – just in time for Christmas.
Sometimes you make a holiday wish and it really does comes true!
When she received a life-saving lymphocyte infusion on Nov. 19th, it was designed to do this – put her back into the hospital sometime between Day 30 and Day 60 post transfusion to experience GVHD (graft vs. host disease).
Now, we await the “natural chemotherapy” to take over and identify and attack her leukemia. The past month has been very difficult at home. She has rarely left bed over the past three weeks as this complex beast has taken over her body. As her blood counts rose and improved, her energy fell. As her bone marrow got stronger, so did the disease in attacking her.
It’s a helluva thing to witness – all of this. Jenn is very thin, very frail, and very uncomfortable. A friend asked me yesterday how she’s doing and all I’ve got for you is this: she truly hasn’t had a “good day” since August.
She spent 47 days at the hospital the first time. Then, four more after the cheesecake incident. Then, two more after the post-Thanksgiving pumpkin roll. We also did an all-nighter in the ER at Johns Hopkins (a.k.a. “hell”) on a Ravens game day morning.
Tonight, on Christmas Eve while her family gathers in New Hampshire for their traditional Polish kielbasa meal, Jenn will be spending her 112th night at Johns Hopkins in the cancer ward since March 2014.
As my mom has said: “She’s been through it…”
But it’s not over and we really don’t know where the end of this journey is leading or where the graft vs. host reaction will lead us in the coming weeks. I outlined the potential side effects here on Thanksgiving in my previous update about Jenn.
The doctors are using steroids to combat and control the GVHD. They’re also doing various things to keep her more comfortable and monitor her diabetes at the hospital. We expected a sunburn-ish rash but that hasn’t happened. Instead, it’s been high liver numbers and various cramping and all-over discomfort.
While she battles and heals, we’d love to remind you of some ways that you can help us help others in the fight.
There are two things you can do to help us during your holiday meals and visits.
Please encourage all of the healthy young people at your holiday meal to get on the bone marrow registry at deletebloodcancer.org or via www.ThereGoesMyHero.org. Tell them our story! This is how Jenn’s life was saved. We’re paying it forward by trying to get you to help us save more lives in the future.
Be a hero!
And if you’re still shopping after Christmas, please use our giveaspit.com app for your online purchases. This helps our partner at There Goes My Hero, who help local folks in the leukemia fight.
Please keep them in your thoughts as well. We lost a family friend’s daughter on Tuesday to leukemia. She was diagnosed 12 days ago and now she’s gone. It was so sudden, so incredibly sad and awful – simply beyond words.
She was 16. She was full of life. She loved sports. She was the niece of one of my incredible Dundalk High Class of 1985 classmates – a guy named Frank Vanik, who battled multiple sclerosis for three decades with such grace, dignity and “life” that it takes my breathe away.
I wanted to share this video of Michael Vick being kind to my pal Frank Vanik because it made him very happy toward the end of his journey on earth.
And we want to honor Frank’s memory – he was such an incredible pillar of strength and courage for Jenn and I and we think of him often – and his amazing, strong, beautiful family on this holiday as they’re suffering a tragedy at the hands of leukemia.
Keep them in your thoughts.
We’re sending massive holiday love to all who love us and strength to everyone who is in the fight…
Keep the faith!
Make someone happy! Eat! Drink! Love! Live!
Merry Christmas from us over at The Hotel
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Posted on 27 November 2015 by Nestor Aparicio
“You must be able to respond to your circumstances
as they exist – not as you would like them to be.”
– Brian Billick
WNST.net partner & Super Bowl XXXV
Head Coach Baltimore Ravens
THE BONE MARROW TRANSPLANT NURSE said the blood – or more accurately the “lymphocytes” – would arrive at 2 p.m. At exactly 2:07 on Thursday, Nov. 19th, she walked in the room with another plastic bag filled with the red river of life. This was a much smaller bag than anything I’d ever seen attached to my wife’s tree of connected devices, medicines and fluids.
“We’re only giving her the stuff she needs,” the nurse said as she prepared to attach it to Jenn. So, this bag of T cells from a 22-year old man in Germany designed to stimulate a graft vs. host disease in her body to kill her leukemia this winter, took quite a circuitous route to her room on the fifth floor at Johns Hopkins last week.
The collection was done in Cologne. It was transferred to Frankfurt via train, then flown to J.F.K. Airport in New York, and then flown from Newark to BWI. It came with a delivery man named Udo in a taxi from outer Glen Burnie to Johns Hopkins. He spent the next three days hanging out at a hotel near Ferndale. Not incidentally – because this bag of lymphocytes is time sensitive – there was a complete backup plan with a different flight through Detroit (if necessary).
I’m not making this up.
Once it was connected to Jenn, gravity took over and the bag of lymphocytes flowed into her veins. The official prediction from the nurse was “less than an hour” but it only took 25 minutes once she began the drip at 2:22 p.m.
At 2:47 p.m. on the Thursday before Thanksgiving, we believe my wife’s life could be saved for the second time by this magnanimous – and for now, anonymous – angel across the Atlantic Ocean. On June 26, 2014, this German man sent a gigantic bag of bone marrow to save her life the first time. He wrote her this letter signed, “your genetic twin.”
They have genetically identical blood, which is why this will work. It’s why we’ve traveled the world and swabbed folks for the bone marrow registry since the beginning of her cancer. This is how lives are saved – matching folks with the same DNA. Coincidentally, both Jenn and her donor have “B Positive” blood.
And the week before Thanksgiving in America, he gave us something to be very “thankful” for and one day next summer we positively hope to meet him somewhere cool and thank him in person for saving her life – twice!
Of course, we wonder what we’ll say to him. And I wonder what they say to him when they ask him to do this? And, no doubt, they must say it in German, right?
It’s all so big, so incredible – like something in a movie that doesn’t even make sense.
The first time left us speechless. This second time – amidst a country here that’s seemingly lost its …
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Posted on 08 November 2015 by Nestor Aparicio
“All of my life I’ve been a type 1 diabetic. I’ve always taken life day by day.”
– Bret Michaels
ON THE 34TH DAY OF HER SECOND battle with cancer, Jenn slept and vomited and slept some more and vomited some more. Needless to say, it’s been a rough fifth week here at The Hotel for my beautiful wife in this #Jennstrong2 journey to a new, cancer-free life.
When she was first diagnosed with leukemia in March 2014, our initial fear was that somehow her Type 1 Diabetes would factor into her prognosis and her ability to survive all that was about to happen to her 112-pound body during the first intense cancer treatment and chemotherapy. Until this week, it was always an issue – and a well-maintained one – but never a major factor outside of basic monitoring.
I have written extensively about her journey over the past five weeks. Because of the complex nature of her leukemia treatment and the daily roller coaster of things that could – and have – gone awry, I’ve been updating her situation weekly via my blog here. Trust me, you wouldn’t want a daily or hourly report from here. It’s simply too volatile at times. It’s cancer. Stuff happens, the doctors manage it and you hold on tight and wait for improvement.
You can read backwards here to be fully in the loop about her path to recovery.
I also wrote extensively about the first 18 months of her miracle first cure during my 30-30 #GiveASpit tour this summer when we traveled to create awareness for leukemia and the bone marrow registry that saved her life. Here are Part 1 and Part 2.
Today, however, she is slowly coming out of four days of hell because of some scary things that happened to her blood chemistry during the middle of the week. On Thursday evening, Jenn had a brief and early-detected episode with a complication of her diabetes. It was the first time anything significantly bad has occurred because of a medical condition she has managed since 1991.
I needed to Google it on Friday afternoon to understand it because I’d never heard about it before, despite almost 13 years of living with a diabetic.
It’s called Diabetic ketoacidosis (DKA) and, according to Diabetes.org, “this is a serious condition that can lead to diabetic coma (passing out for a long time) or even death.”
When your cells don’t get the glucose they need for energy, your body begins to burn fat for energy, which produces ketones. Ketones are chemicals that the body creates when it breaks down fat to use for energy. The body does this when it doesn’t have enough insulin to use glucose, the body’s normal source of energy. When ketones build up in the blood, they make it more acidic. This is a warning sign that your diabetes is out of control or that you are getting sick.
Because they’re literally checking her blood composition and counts several times a day, this was caught very early and was nipped in the bud. But it was still a massive blow to her progress this week.
On Thursday, it began with diarrhea and then full nausea and vomiting in the overnight and much of the day Friday, which led her to sleeping and waking only to vomit more, literally around the clock, for 72 hours. Of course, she was wired to heart monitors and the largest number of bags of fluids, medicines, insulin, antibiotics and drips that I’ve ever seen attached to her tree to neutralize the effects of DKA.
They’re also keeping an eye on her appendicitis, which has appeared to calm for now after a week of antibiotics.
She is now pretty washed out, frail and fatigued. And it was the second time during this second journey that she experienced several days of “delirious” …
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