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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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#JennStrong2 Thanksgiving update: Now awaiting our holiday miracle…

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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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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#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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Baltimore again among top rated viewing markets for Brazil/Germany match

Posted on 09 July 2014 by WNST Staff

Highest-Rated Non-U.S. World Cup Match Ever on ESPN/ESPN2

ESPN’s telecast of Tuesday’s Brazil vs. Germany FIFA World Cup semifinal match – a 7-1 German victory and Brazil’s first loss in a competitive home match in 63 games (since 1975) – ranks as the highest-rated and most-viewed World Cup semifinal match ever on any U.S. network, according to Nielsen. Brazil-Germany averaged a 4.2 US household rating and 6,643,000 viewers, based on fast nationals. ESPN’s television coverage peaked in the final half hour of the match (5:30–6 p.m. ET) with a 4.6 rating and 7.5 million viewers.

The previous best World Cup semifinal was a 3.4 rating (5,850,000 viewers) for Germany-Italy on ESPN during World Cup 2006 in Germany. Yesterday’s match also represents increases of 56 percent (2.7 rating) and 58 percent (4,204,000 viewers) over the comparable Uruguay-Netherlands semifinal four years ago in South Africa.

Excluding U.S. team matches, Brazil-Germany is the highest-rated World Cup match ever on ESPN/ESPN2, surpassing the 4.0 rating for Mexico-Netherlands (6,571,000 viewers) from the Round of 16 (June 29).

Top 10 markets for Brazil-Germany: New York (7.5), Hartford/New Haven (6.4), Washington, DC (5.8), San Francisco (5.8), Miami/Ft. Lauderdale (5.6), Boston (5.5), West Palm Beach (5.5), Los Angeles (5.0), Baltimore (4.9) and Richmond/Petersburg (4.8)

To date, the highest-rated markets on the ESPN networks are: Washington, DC (4.6), New York (4.3), San Francisco (4.1), Los Angeles (3.7), San Diego (3.7), Hartford/New Haven (3.6), Orlando (3.5), Miami/Ft. Lauderdale (3.5), Richmond/Petersburg (3.4) and West Palm Beach (3.3)

Significant TV Viewership Increases Over 2010 and 2006

Through 61 matches of the 2014 FIFA World Cup, ESPN, ESPN2 and ABC are averaging 4,233,000 viewers and a 2.6 US household rating per match. The 2014 audience marks increases of 43 percent (vs. 2,967,000 in 2010) and 107 percent (2,042,000 in 2006) in viewers, and 37 percent (vs. 1.9 in 2010) and 86 percent (1.4 in 2006) in ratings. (Note: Ratings and viewership numbers are based on the specific match windows, not including pre-match studio coverage.)

ESPN Digital establishes new highs for World Cup semifinal match

2.1 million unique viewers watched the Brazil vs. Germany semifinal on WatchESPN for a total of nearly 90 million minutes, the highest numbers ever for a non-U.S. team soccer match, providing a 10 percent lift to ESPN’s English-language television viewership.

ESPNFC.com had 9.8 million video starts, up more than 2,000 percent over the comparable day for World Cup 2010 and the best ever mark for that platform. Also, ESPN’s SportsCenter app had 3.6 million unique users, a 484 percent gain from the comparable day in 2010.

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