52

Everyone has Timehop for their Facebook these days, and it’s great because you can glance backwards in time to that exact day and see what you were doing- one, two, three, even seven years ago, as far as your social media capsule will reach.  An amazing, fun use of technology.  I, however, am afraid to glance onto the app these days, because I most certainly know what was going on last year.  I was watching Beydn struggle to live; he fought so hard. He displayed more courage than I will have in ten lifetimes, and he lost his battle.  November was the start of it, the month he was diagnosed. Optimism was high and worry was rampant but we all knew he was going to beat T Cell ALL.  Looking back, I was a fool and didn’t have an understanding of what he faced.  I simply read the statistics and had unwavering confidence that every bump in the road was a step toward remission, being cured and living a normal life.  Had I known then what I know now I would’ve crawled into bed with him every second.   I would have cried on his shoulder and would’ve hugged him enough to make up for the 71 years of life he would lose. 

The problem is as a cancer parent you learn these things- you can never hug your kids enough and crying will always be there.  He didn’t want me to crawl into his bed with him.  He was, after all, almost 11, and at that age where he was too cool, but dammit I would’ve stayed awake 24/7 just to stare at him while he slept.  All of these could haves, should haves and would haves will never go away, but what can go away is the disease that killed him, the disease that will kill many more.  See, the most horrible thing was Beydn beat Leukemia.  On December 7^th his tests came back clear and in remission.  The problem was his lack of immunity made him susceptible to anything and everything.  He died from a non-treatable mold fungus named SCEDOSPORIUM.  We tried for three weeks with every anti-fungal drug available and nothing happened.  In the end these fungal infections will kill many more kids, unless we make sure that they are eradicated.  This enemy and killer of kids needs to be wiped clean from the planet, and we can do this but it will take everyone’s help.  I promised Beydn in his hospital room on February 22^nd, between tears, that I would fix this the way he fixed me, the way he saved me.  I will spend the rest of my life finding a way to save as many kids as possible because in the end that’s what Beydn would be doing.

Starting last weekend, November 2, 2014, with the NYC Marathon I am attempting to complete 52 marathons in 52 calendar weeks.  This blog and our website will have a tentative list of events, and if you would like to meet me at them and talk please do.  Throughout these marathons For Beydn will be fundraising so please continue to check back with us for updates on events and how to support, donate, and spread the word.  This sounds somewhat crazy or impossible, but I will run hard and complete all these races for Beydn who will be with me every step.  Please spread the story of the crazy active duty Soldier who is running and running... and running.  And help us spread the word for Beydn on December 1, 2014 by signing up for Thunderclap to post on your Facebook or Twitter.  If it goes well this will be a tool we’ll use to #forbeydn on his birthday as well.

https://www.thunderclap.it/projects/18650-never-forget

The 3rd Day of November

Beydn Swink Virtual 5k

The first ever FOR BEYDN VIRTUAL 5K will begin June 1 and going until July 1, 2014.  Runners have the entire month to complete a 5k and submit their times to forbeydn@gmail.com.  On July 1 all times will be uploaded to this blog and the overall male and overall female will receive a pre-paid gift card with their medals, additional three bib numbers will be drawn randomly and those runners will receive iTunes gift cards as well.  The medals are 2' bronze insert medals with The For Beydn Logo inserted.  Each medal spins, comes with a blue velvet gift pouch to hold the medal, a thank you letter for the foundation, a tax deductible receipt, and a card for 20% off our next race.  The racers can run the race via treadmill, trail or road, track etc,  Simply lace up your shoes and get some miles in for a good cause. Shipping is built into the $20 cost of the race as well. Medals will be mailed following the July 1 deadline.  Each racer is encouraged to email us a story of how cancer has affected them.  Sign up for the race via emai/paypal at forbeydn@gmail.com.

Thank you in advance

Our 501c3 Programs

PROGRAMS

Our programs include meals and vouchers for families in PICU units, toy drives for kids with a childhood diseases, annual scholarships to survivors of pediatric cancer who are seeking a degree from a college inside of North Carolina.  As well as monetary donations to oncology research, concerning safer and more effective treatments for T-Cell ALL/ALL. Donations to research for treatment of fungal infections to include scedosporium, as well as lectures and briefings to medical universities, schools, libraries and other public environments to raise awareness for childhood diseases.

-        MEALS AND VOUCHERS-Working directly with Hospital social workers we will provide gift certificates and  quarterly stipend for hospitals to provide families who are long term residents of a PICU. As a PICU parent we understand how expensive eating at hospital cafeteria’s can be.  Our quarterly goal is to provide four children’s hospitals with $1000 each ($4000 each quarter) YEARLY TOTAL: $16,000

-        TOY DRIVES- Hospitals serve lots of families and during birthdays and holidays a Child who is battling a sickness would love a new toy or game. Partnering with local business we strive to deliver toys quarterly.  Toys will be raised through cooperation of retail stores, toy drive events and donors. GOAL: 1000 TOYS YEARLY

-        ANNUAL SCHOLARSHIP PROGRAM- Though Beydn was only ten he had already decided that he was returning to North Carolina to attend college. In his place we will provide an annual FOR BEYDN scholarship to a North Carolina resident.  This resident will need to be a Pre-Med student, a Nursing student, a Veterinary student or a survivor of pediatric cancer.  The monetary value of this will change yearly depending on the students accepted school.  Hopes are through fundraising we will be able to provide an entire year tuition to one student. ESTIMATED COST: $1200-25,000 annually

-        RESEARCH GRANTS- Working with Pediatric Oncology clinics and researchers we will provide donations to research better treatments for T-CELL ALL/ALL specifically concerning research into less intensified chemotherapy alternatives.

-        FUNGUAL RESEARCH- Working with microbiologists we will provide monetary donations to fund research in scedsporium and other infectious fungal diseases. 

-        LECTURES, TALKS- We will fund medical personnel thereby providing them with the ability to travel so they can lecture medical students, other Physicians and medical conferences.  We will also develop research handouts concerning Fungal diseases and T-CELL ALL

-        BOOK DONATION- Beydn was an avid reader.  In his name we hope to provide books to multiple locations to include but not limited Fort Benning Post Library, Scottish Rite Children’s Hospital, New York City Library,  Ottendorfer Children’s Library GOAL: 1000 new books yearly

-        PICU FUNDING/BEYDN BIRTHDAY DONATION-Yearly on Beydn’s birthday we will provide a donation to the Scottish Rite Children’s Hospital of Atlanta PICU.  This money will go directly into providing the PICU with much needed supplies, special equipment, new equipment and the ability to rent special needs short term items.  PICU’s are in shorter supply of equipment then most people realize.  In Beydn’s name we will strive toward providing a better level of treatment for current PICU patients.  GOAL:$2500 YEARLY

-        BEADS OF COURAGE-This is an outstanding program, we plan to produce a Beydn bead as well as sponsor children in care.  ESTIMATED COST:$2500 YEARLY

#forbeydn

A Kind of Letter

There should maybe be some kind of preamble to this, but I don't have one.

4/24/2014

For Beydn

You died.  It was a sunny Saturday lunchtime, and we held onto you- hands, arms, feet, whatever our fingers could find.  And we let you die.  As much as we’ve ever let you do anything.  You will never have to know what that’s like.  I’m glad for that. The tiniest glimmer of a blessing in this illogical hell.  We stayed with you, wanting it to be over, wanting it to never end.  You died, and we lived through it.

You were born on a Friday, Beydn.  The weekend of a prom that I didn’t go to.  That’s how young we all were.  The weekend of Mother’s Day, your mommy’s perfect present.  Come Saturday the hospital was packed with half the world wanting to see you, to touch you.  Just like it was the Saturday you left it.  I can think of half a dozen people who were in the room when I was there that nearly summer evening.  Not one of them could get close enough.  And it was like that when you died.  If we could have crawled under your skin we would’ve.  We would have breathed for you, given you our lungs if we could.  It doesn’t make sense that nothing in this world of technology made that possible.  The ventilator isn’t actually doing anything.  How did I think that?  It doesn’t make any sense.  It doesn’t make any sense that we were there at all, there in that hospital room with you only ten years from the beginning.

I did not carry you in my body.  I can not speak for you mama because I didn’t grow you.  I will not speak for your daddy because I know his ache is worse than any words I have.  It’s not my place to speak for your stepdad; I didn’t get to see you with him every day.  But I will speak for myself, and there were a thousand things I thought I would get to talk to you about.  There were a thousand things I wanted to explain to the man you were becoming, boy with hands and feet as big as mine.  I thought you would outgrow us all- in a lot of ways.  Now I can only put down in black and white the part of me that belonged just to you, the part that become a parent without knowing one May day.  I will be 70 writing letters to a 10 year old boy.  I can do it until I die.  I did not carry you in my body, but I carried you.  In my arms.  In my heart.  I don’t see any reason to stop now.

So, when I say that I half expect to see you here again, or that I partly anticipated to take you home with us, whole and happy, even in the moment that you died, I don’t say these things because I’m crazy.  It’s just that they seem as possible as any of it.  Or more.  Just as possible as you having leukemia, more probable than your daddy’s shaky voice on the phone, way more feasible than a fungal infection I never even knew existed.  And when I say a part of me looks for you to come in the door any minute it’s not that I don’t remember the truth.  There's just a hope that won’t be still, a wish I’ll always have.  We were always waiting to see you; there's no way to erase it.  Not any more than there's a way to erase you.

 

Annie

FOR BEYDN

So many kind people have shown love and support for Beydn (pronounced Bay Den) and our family over the last few months without even being fully aware of what happened to him.  On November 3, 2013 Beydn was diagnosed with T-Cell Acute Lymphoblastic Leukemia at Scottish Rite Children’s Hospital of Atlanta.  He underwent chemotherapy, and after eight days was able to go home until his next treatment.  Within four days Beydn was back in the hospital where he stayed for another nine before returning home to Fort Benning, Georgia.  A few days later, just before Thanksgiving, he was readmitted, and on December 8^, 2013 he was moved to the PICU.  As his condition worsened Beydn was sedated, intubated and placed on dialysis.  When internal bleeding in early January led to an emergency surgery we discovered Beydn was now dealing with a section of necrotic colon that had perforated.  Beydn’s status would change daily.  Some days dawned with more hope than others, but over time his condition steadily worsened.  Results of blood cultures came back showing that Beydn also had Disseminated Scedosporium Fungal Infection as well as Aspergillus.  It’s not clear if these fungal infections were the cause of the deterioration in his lungs, intestine, and kidneys, but they definitely destroyed them further.  And it’s certain that the chemo, which actually did its job by putting Bey into remission, also opened him up to the infections he couldn’t fight against.  Chances of surviving a central nervous system fungus were low but we held out hope for a miracle.  After weeks it became apparent that the medicine for the most severe fungal infection was ineffective.  Beydn was in liver failure and renal failure.  We were told his intestines, which had never really recovered from surgery would never function, that his wound would never heal.  Beydn died on February 22, 2014.  He was ten years old, and would have been eleven on May 9^th.

 Beydn loved to read, ride his bike, explore the outdoors, research travel brochures and visit North Carolina.  He was a military kid in label and in attitude.  His dad and step dad were both active duty.  At the age of ten he had already lived or traveled to over a dozen states, the true example of resilience and flexibility.  Beydn was a huge fan of Greek mythology including the Percy Jackson kids’ series.  He loved Duke Football, the Carolina Panthers, specifically Cam Newton, and Star Wars.  He swam like a fish and loathed math.  He was the big bother of four brothers and two sisters and had the protector role down to a T.  Even while sick he worried about his siblings.  Beydn was a sushi eater, liked Chinese buffets and Shark Week.  He wanted to rescue dogs, dolphins and was the kid who convinced his push over dad to stop and save a turtle in the middle of the road.  Beydn was the boy who once swallowed salt water from an ocean wave to the face only to throw it back up onto the beach, and instead of whining to leave he dove head first back into the water. 

The For Beydn Foundation is currently in its building stages, and will continue to grow over the next few months. The first major thing our family hopes to do in our buddy’s memory is to return to Scottish Rite on his birthday and make a donation to the PICU in order to help other kids stride toward healthy lives.  Through our Facebook page FOR BEYDN, we have are currently selling leukemia awareness bracelets for $5 each and will soon offer For Beydn t shirts.  The other part of our Beydn’s Birthday Gift project is a toy drive.  We hope and dream that we are able to bring enough toys to Scottish Rite for Beydn’s birthday that every kid there can hand pick something to brighten their stay. This will be the first of an annual donation to Scottish Rite on Beydn’s birthday.  We will be standing in that hospital lobby on May 9, 2014 to prove that leukemia may have been stronger than Beydn’s body, but it’s no match for his legacy.  The memory of Beydn’s passion for life and his strength and bravery in the face of disease are inarguably strong enough to strike fear into the heart of pediatric illness.  Our foundation’s logo is designed as a sentence.  For Beydn.  Two words that will define our family and our lives.  The orange period signifies that with Beydn’s name and courage we can eradicate this illness and many others, period, the end.

Facebook-For Beydn

Twitter- @forbeydn

Click for Kids- http://click4kids.kintera.org/forbeydn

Scottish Rite suggested toy link

http://www.choa.org/support-childrens/donations-and-activities/gift-list

Infants and toddlers
Rattles and squeeze toys, Crib Activity Center, musical crib mobile (no cloth) with bed rail clamp, Fisher-Price Rainforest Waterfall Soother, music boxes, infant lullabies, Click'n Chatter Telephone, Baby Einstein DVD's and toys, Baby's First Blocks and Play Gym, non-breakable infant crib mirrors that clip onto a rail, pop-up toys, Fisher-Price Little People, plastic links to hang rattles on crib, plain "onesies" (clothing item), teething rings (no cloth), toys that light up or make noise, 6" stuffed animals with non-glass eyes, infant swings, exersaucers and necessary batteries for items.

Preschool-age
Touch books, Baby Einstein products, Play-Doh, Lego Duplo Blocks, Little Tykes toys, blowing bubbles, Little Kids "No Spills" Bubble Tumblers, Fisher-Price play medical kit, cars and trucks, Brio trains, non-toxic paint/brushes, plastic cars and animals, plastic food, Mr. Potato Head, Big Wheels, big dolls, coloring books, big crayons, Fisher-Price Peek-a-Blocks, clothing items and medium-sized stuffed animals.

School-age
Puzzles, Barbie's, large-sized blankets, Magna Doodle, games (Monopoly Junior, Sorry, Connect Four, Guess Who, LIFE, Trouble, Apples to Apples, checkers), Legos, Lego Friends, small trucks, Crayola art kits, coloring books and crayons, jewelry kits with beads, DVD's, action figures, handheld games, Wii games, markers, non-toxic paint/brushes, battery run toys (please include batteries), school supplies, "I Spy" books, harmonicas, Spider Man, clothing items and stuffed animals.

Adolescents
$5 gift cards (iTunes, Target, Wal-Mart), large-sized blankets, card games (UNO, Scrabble Slam, Monopoly Deal), Jenga, Taboo, playing cards, model kits, craft kits (no sand), stationery, pen and pencil sets, plastic picture frames for decorating, wordsearch and crossword puzzle books, hair accessories, brushes and combs, PG-13 DVD's, handheld games, cosmetics (hand lotion, body sponges, soaps), journals, NERF footballs and other sport balls, nail polish, Wii games, phone chargers (iPhone, Android, etc.) and clothing items.

 

PS- Stick with us in the next coming months as we grow a foundation website, meet with top microbiologist and  make a difference.