Tag Archive | "bone marrow"

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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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Great news on saving lives and “An Evening of Heroes: Champions and Survivors” is set for May 19th

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:

 

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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.

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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!

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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.

Tickets are on sale now. We have discounted single tickets through THIS MONDAY ONLY!!! Regular price will be $150 each but it’s just $125 for the early birds who want to commit to joining us.

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: nasty@wnst.net always finds me via email. Save the date and help us save more lives via our friends at There Goes My Hero.

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JennStrong2 update: Our 2016 New Year’s Resolution is to stay out of the hospital

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”

Paul Hewson

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.

If there’s any “message” or “gift” or “thing you can do for us” this is it: get on the bone marrow registry now!

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.

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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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JennStrong2 update: A Merry Christmas Miracle from The Hotel

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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A #JennStrong2 update: Cancer complicates things…

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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#JennStrong 2 update: Every day is a bloody Halloween at The Leukemia Hotel

Posted on 30 October 2015 by Nestor Aparicio

 

“The real glory is being knocked to your knees and then coming back. That’s real glory.”

-Vince Lombardi

 

IT WAS ONLY TWO DROPS of blood.

On the fourth day of her stay at The Hotel, on this second leukemia journey of pain and reward, my wife Jenn was seated as her nurse unhooked her first bag of B Positive blood. Somehow, a pair of lonely droplets sat under her tree on the floor – beaded up, shining ruby red, like eyes staring at me.

Jenn said to me, “Hey, can you grab a napkin and clean that up?”

And as I looked down and saw it, I just couldn’t do it.

My stomach turned, my eyes glazed over and I needed a moment to close my eyes and collect myself. Nurses and doctors and medics and diabetics – a club my wife has been a member of since 1991 – all see and deal with the scarlet fluid of life all day, every day.

I must admit it was the first time that I saw Jenn administer a shot into her abdomen in February 2003 that I really fell in love with her because of the empathy I felt and the toughness she exuded in dealing with pain and self-inflicted needles and blood and courage. Honestly, I’d never met a girl with that kind of innate grit.

This weekend she’s dealing with the effects of an appendicitis that was diagnosed late Wednesday night after an evening of stomach pain. We learned earlier in the week that her donor’s schedule was delayed with the blood she’ll need to survive this leukemia diagnosis and her bone marrow transplant from June 2014.

So instead of Thursday Night Football with the Patriots and a potentially life-saving lymphocyte infusion from her 22-year old German donor, she instead waits for a variety of antibiotics to settle down her appendix, which they do not want to remove because she currently has no immune system to fight bacteria or to heal wounds.

Surgery is the last thing in the world she needs right now. The doctors believe that it will be avoided and she’s trending in a positive direction.

Cancer isn’t fair and it does kinda what it wants. Or, more fairly, it’s the chemotherapy and poisons, which are designed to kill the cancer, that create other sticky situations throughout various organs in the body.

The medical team expects signs of neutrophils sometime over the next two weeks. This would indicate her white blood cells are coming and her body is bouncing back. The appendix situation remains “moment to moment” and she’s constantly being monitored to make sure this doesn’t get more complicated. Heart monitors, blood pressure checks, lots of labs and scans are all involved at all hours of the day.

Sleep doesn’t come easy at The Hotel.

Meanwhile, during the Halloween weekend of revelry and costumes and candy, we’ve only got blood – and not the fake kind – here at The Hotel. And like vampires they’re taking plenty of blood out of her.

Earlier in the week, she started feeling better from a burned-out gastrointestinal tract from the chemo. After eight days with mucositis and incredible pain, she was finally getting back to eating oatmeal and soft foods like mashed potatoes and soups. Now, she’s being fed once again by a nutrition solution every night because they can’t afford to find out what real food might do to her stomach if her appendix gets uppity. She’s slowly getting back to clear fluids and being able to drink water again.

We’ve had throat sores and nose bleeds, fevers and incredible bruising (she has very few platelets) – plus tears and fears and plenty of pain and discomfort this week.

And plenty of B Positive blood being drawn, given and used.

A bloody Halloween, indeed…

I see lots of macho muscles from idiot sports fans on the internet and every day out in the real world someone is playing the role of “tough guy” – but ask yourself how you’d feel about pricking your fingers a dozen times a day and giving yourself shots twice day, EVERY day just to survive the day and live through the night?

As a diabetic, Jenn has been doing that every single day of her life since 1991.

We didn’t need Halloween or cancer for every day to be a bloody day at my condo. Alcohol swabs, needles, pins, gauze and droplets of blood on clothes are a …

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A #JennStrong2 update: a second chance at life next Thursday

Posted on 22 October 2015 by Nestor Aparicio

 

“Yesterday is history. Tomorrow is a mystery. Today is a gift, that’s why they call it the present.”

Mike Ditka

 

 

FOR A WHILE, IT SEEMED like the sickness would never end.

The first nausea came in a brief wave last Tuesday right after her second day of the second round of chemotherapy. She was on her way to the bathroom and got one whiff of my dinner and the vomiting began and it didn’t stop for seven days. Last Thursday morning, she sent me a text that read: “I’m struggling.”

I arrived 30 minutes later and when I left after midnight on Friday, she was still living with a bucket at her feet and more waves of stomach-churning illness channeling through her into the fourth straight night.

On Saturday, with her sister by her side, she didn’t know what day it was and was quite combative and insistent about many rambling thoughts. Jenn was convinced that I wasn’t even with her on Thursday or Friday. After the Ravens loss on Sunday night, I slept on the cot in her room because she was so disoriented that I didn’t want her waking up alone in a panic without being able to calm her.

She wasn’t on her mobile phone or iPad for eight days because she really couldn’t type. She was far too loopy and weak to even paw at the keys as her frustration mounted. All throughout the weekend nights, she said dozens of nonsensical phrases, rambling words and was wildly talking in her sleep and twitching a bit with her hands – almost trying to motion by pointing like she does when she talks.

At one point on Sunday morning, she sat up in bed and looked at me, insisting with full clarity that I send her sister a text reply to tell her that she “got the message.”

Meanwhile, her sister was sitting two feet away from us, and staring at her. She was asleep again moments later. It was like something out of “The Shining” – a giant fever dream.

Her sister Jessica was planning to come to Baltimore to spell me, so I could go to San Francisco for the Ravens game. I never really came close to leaving her. She was just so, so sick.

(And that was before she watched the Ravens play in Santa Clara.)

By Sunday afternoon, the lesions caused by the chemo had settled into her esophagus and throughout her GI tract, and the pain was so severe that on Monday night the bags of morphine started coming. On Tuesday morning, they began feeding her through a tube because she needs the liquid nutrition to keep her strength for the rest of this literally bloody battle. Plus, with the sores on her tongue, in her mouth and down her throat, there is no way she can swallow anything beyond a little water. They have a dentist-style suction tube next to her bed to extract the mucus from her throat.

On Tuesday night, she started to rebound with some energy. I’m pretty sure the pain meds act as a stimulant. Her hair stylist came to shave her head bald once again because her beautiful, curly hair was ripping out of her scalp in clumps over the weekend.

On Wednesday morning, she announced that she wanted a Boston cream donut. Of course, there’s no way she could eat it. But, she did make me bring her some shepherd’s pie later that night and she made it through a few mouthfuls of mashed potatoes and gravy.

She said the mashed potatoes were “like glue in her throat.” Today she is moving on to Ensure milkshakes. This is why…

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There is no romance in leukemia treatment.

Week 2 at “The Hotel” has been a living hell for my wife.

It has been a display of courage and bravery that leaves me speechless. It takes my breath away.

Welcome to #JennStrong2.

Yes, cancer still sucks. Anyone who’s been subjected to it as a patient or a care provider understands where Jenn is in the process of her long journey to recovery and health. It’s been incredibly hard to watch and …

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Surreal journey of cancer has returned with new prognosis for #JennStrong2

Posted on 13 October 2015 by Nestor Aparicio

 

“To me there are three things everyone should do every day. Number one is laugh. Number two is think — spend some time time in thought. Number three, you should have your emotions move you to tears. If you laugh, think and cry, that’s a heck of a day.”

– Jim Valvano

 

 

WE CALL IT THE HOTEL, but make no mistake it’s very much a hospital.

Cold. Sterile. Corporate. Every day it’s where Obamacare and big business and big pharma and the best and worst of our society meet under the banner of “healthcare.” It is its own education in the ways of the world and life in America in 2015.

Full of sick people. Full of people fighting for their lives and the good people inside the walls in various shades of blue and green scrubs and white jackets who are trying to keep them alive.

Bad food. Bad cable TV. Awful towels. Great nurses. Amazing doctors. A friendly support staff. Parking with little cards that spit out of a machine and act as an ATM. It costs $6 a throw (even after you purchase the little green books…it was $5 last year, so it’s only a 20% bump) and I park twice a day. You do the math.

Even down to the gaudy, shimmery marble lobby, it’s a lot like five-star hotel – Jenn maintains that you do get 24-hour room service, a butler and several maids to wipe down your room twice a day. Anything you want and a button to push to get it. The bed even adjusts.

I call it the factory of extreme hope and sadness.

I see the best and worst things in the world here every day.

My wife will be living here again for the next month and beyond. We’ll be here virtually every day for the next six months even after she comes home.

Rest assured, she’ll be fighting for her life every day.

This leukemia thing is hard. It’s heavy lifting. The cancer diagnosis the first time was brutal. The long journey back to safety and health came to a tab of well over a million dollars the first time and lord only knows where the end of this nightmare lies.

But you can’t even begin to think about the drugs, the hospital stays, the bills, the expense, the insurance issues (and we luckily have excellent insurance because her job at Verizon and the people there have been amazing) or the risk. The sheer volume of people, hours and science involved in saving her life a second time boggles my mind as it did the first.

There are 137 different types of blood cancer in the world. And, as smart of a guy as I think I am sometimes, I’ll never understand much about this because it honestly makes me queasy as hell.

There’s lots of sitting around and waiting and time for thinking. Lots of tubes and bags connected to Jenn. Lots of very sick people with masks everywhere you go. Lots of really freaked out family members in the lobby, often sobbing and in a state of shock the way I was the first few days last year.

And then there are those victims’ extended friends and families on the outside wondering about prognosis and medicines and cancers and answers. All of them Googling buzzwords, worrying, talking on social media and inquiring as respectfully as possible.

The question you want to ask and the only real question is: “Will she be OK?”

We will always believe that she will survive. As Tug McGraw said, “Ya gotta believe…”

And every day – all day, really – caring folks are asking me the same question:

“How is she feeling?”

That answer is pretty simple: “Probably not well as you want her to be feeling.”

She has cancer. They’re dumping various poisons and toxins (aka chemotherapy) into her bloodstream. The nurses wear rubber suits as they administer it into her bloodstream. She’s always an hour away from feeling like garbage even when she’s feeling semi-OK.

Mouth sores, bleeding, breathing issues, heartburn, nausea, diarrhea, headaches and extreme fever – there’s seemingly a pill or a bag full of medicine with fancy names for all of ‘em – and we’ll see it all just like the last time.

And those are just the physical pains. The emotional toll and time and the possibilities can all sap you of your desire to live and fight.

We won’t let that happen.

Promise!

Call us eternal optimists but we kinda refused to believe that this could happen the second time. But, our doctors did tell us last year that because she didn’t experience any graft vs. host disease (GVHD), she was statistically far more susceptible to a relapse.

So, do you want the awful rash and all of the risk and pain that comes with it or not?

Because she didn’t experience GVHD last summer, this relapse occurred and she’s got cancer in her body again. It was simply dormant over the last 15 months.

Last night, I met the couple in the next room. They look to be 40. They have three kids: 10, 8 and 6. They live in Virginia. She relapsed three days ago after five years of being clean. The husband is ashen. He’s an hour from his family, sleeping in a cot next to his wife after battling this thing when all three of their kids were toddlers. Now, they’re here again in an in a similar state of utter disbelief.

Behind every door, there’s a story here at “The Hotel.”

So many folks don’t understand what’s happening with Jenn and given the complexity, we certainly can relate. We’ve been battling this thing since March 20, 2014 and I’m still learning nuances every day.

It took her doctor 45 minutes to explain our current situation earlier this week and I’m going to try to explain as well as I can here:

Her leukemia, an extremely rare form known as acute bilineal leukemia (ABL), is back. It is the same cancer she had 18 months ago. Because the chemotherapy got her to remission (which means “no current signs of cancer”) last April, they’re using the same protocol and believe that it will work to get her clean again.

Our first goal is to get her to remission.

Instead of being prepped for a second bone marrow transplant, her doctors are using a different method to cure her this time. We are going back to her original donor in Germany – the same guy who wrote THIS LETTER in the hours after her saved her life last June. We will not ask him for bone marrow this time but instead for blood, a much simpler request and procedure.

The real need is for lymphocytes, which are white blood cells that she needs to enact this graft vs. host disease (GVHD) that would cure her.

Essentially, they need to get her very sick in order to get her better.

We are playing with fire here. You need GVHD in order to fully overcome the leukemia and have your body adjust to a new immune system. But GVHD can also be life threatening.

When it comes, she will experience a total body rash that will apparently burn like the gates of hell.

“It will be a complete rash from head to toe,” her doctor told us. “It’s not subtle.”

We felt blessed that she didn’t experience this awfulness the first time but it inevitably means that she’s back here with leukemia again and the goal of the doctors is to get her

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My wife’s leukemia has returned, our #JennStrong2 cancer battle has begun

Posted on 02 October 2015 by Nestor Aparicio

Apparently, one miracle wasn’t enough for the most beautiful girl in the world. Now, my amazing wife Jennifer will try to repeat with back-to-back miracle seasons and beating cancer again with a second bone marrow transplant.

“I don’t know how to tell you this but your leukemia has returned,” is what her doctor told her while she was standing at a lunch buffet in a supermarket in Hunt Valley at 1:30 on Tuesday afternoon.

I was in the middle of a WNST radio conversation with baseball writer Bob Nightengale when she sent me a frantic text.

Clearly, we were both floored – completely shocked and devastated by the news.

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That is not what we were expecting to hear on Tuesday when Jenn went to Johns Hopkins for what we thought was some routine blood work in the morning.

Yes, she had been battling some low energy over the past few weeks. She didn’t feel quite herself in Denver two weeks ago when we traveled to Mile High to see the Ravens and Broncos. She came home with a cold, some sniffles and a sore throat. She got an antibiotic and was feeling better every day – almost normal and 100% earlier this week.

Life had been so normal for us for so long ­– her initial bone marrow transplant was June 26, 2014 – that we never feared or envisioned this relapse and second battle, which we expect to be just as demanding and gruesome as the first battle.

Now that we have discovered that her leukemia has returned, we realize there have been some clues.

She had a massive cramp in her foot last Friday night at the Maritime Magic event at Living Classrooms Foundation. She started noticing a few small bruises on her body over the weekend. She’s been a Type 1 diabetic since 1991 and noticed some weird ranges in her blood sugar over the past week.

And on the final day of Blood Cancer Awareness Month, we became again aware of the silent ticking time bomb of leukemia. The cancerous cells exploded in her body again on Tuesday and, once again, will put our lives on hold for the next year.

Jenn had given blood 13 days earlier, when she first started feeling sick, and her blood was cancer free. Now, she has blasts in her blood and her platelets and key numbers are beginning to dive as the cancer begins to ravage her immune system.

She will move back into the hospital on Sunday night and her chemotherapy regiment will begin on Monday morning. We expect a lengthy hospital stay and a long battle. She spent 56 days in the hospital on the first journey – including 42 days on the first stay in March and April of last year. We were in the hospital literally every day for 180 days.

Honestly, this time, we’re just hoping to have her home by the end of the World Series or sometime around Halloween. And we’ve put our full faith in the doctors at Johns Hopkins who miraculously saved her life the first time.

My son has been on his honeymoon this week at Disney World, the Ravens played in Pittsburgh on Thursday night and we were headed for a five-day beach getaway and now, nothing else seems to matter anymore.

I wrote a massive blog about my search for happiness last month.

But, as Don Henley, sang: “In a New York minute, everything can change.”

Indeed, the wolf is always at the door.

Life is very fragile and our time on earth is very limited.

We’ve had 72 hours to digest this diagnosis and the second battle begins now.

It’s #JennStrong2.

And once again, my wife told me on Tuesday night: “I’m not going to f**king die. I will fight!”

So, off to the 5th floor we go for an extended stay and a full focus on her getting to remission and whatever it takes after that.

Her doctors are working on various protocols and developing an evolving strategy to save her life.

We know this journey well. We’ve become close friends with survivors. We’ve also lost some friends along the way. We’ve already run into folks at the hospital who were battling with her in 2014 and are still fighting for their lives every day.

And we’ve also seen many miracles.

Last Saturday night, we went to have our annual pre-game beverage with Marvin Lewis here in Baltimore before the Ravens game. We ran into this young lady with some Cincinnati roots, who is a five-year bone marrow transplant survivor.

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Inspiration is all around.

Survivors abound. That’s what There Goes My Hero is all about!

But this #JennStrong2 fight will not be any

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