Home with his most prized possession

Brave Ben came home from New York a little over two weeks ago, bringing with him an item that now is his most prized possession.  We saw it for the first time when he and his parents came to visit this past weekend to celebrate his mom’s birthday…

After receiving his clean bill of health from Dr. Berenstein in New York, Ben had a couple of days to celebrate before flying back home.  His family joined other families staying at the Ronald McDonald House for a bus tour of New York City.  And he visited the Sweet Shop where he could indulge his sweet tooth…

The Sweet Shop

 

But the excursion that had him more excited than Christmas and his birthday put together was an outing sponsored by the New York City Police Department, specifically the 20th Precinct.  Ronald McDonald families were treated to a boat trip on the Hudson River and were taken back to the precinct where the NYPD cooked dinner for them and let the children sit behind the police desk and on police motorcycles and horses and dress in protective gear.

 

Behind the police desk

 

Our little guy posed with Chief Murtagh and was even featured in the 20th Precinct’s Twitter post on June 10.

Posing with the Police Chief

20th Precinct Twitter feed

20th Precinct Twitter feed 2

Ben was in seventh heaven, and it was here that he was given his most prized possession.  One of the female officers from the 20th gave him one of her NYPD shirts!  Here he is wearing the shirt back at the Ronald McDonald House…

The Shirt

(He was so excited to receive this gift that he even wore it to church this past Sunday!)

Back at home in Georgia a day after the excursion, Ben found several welcome messages from his sweet neighbor…

Our little trooper is glad that he doesn’t have to return to the hospital in New York, but he’s going to miss the Ronald McDonald House and all of the wonderful people there…

He's going to miss the Ronald McDonald house

#BenStrong   #Soli Deo Gloria

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Brave Ben is cured !!!

Original tweet

This tweet says it all!  It was posted yesterday on Twitter by Dr. Thomas Oxley, neurologist and  neurointervention fellow working with Ben’s doctor, Dr. Alejandro Berenstein, at Mount Sinai Hospital in New York.  As Ben’s mom said, “What a journey for a really little boy and a really Big God!”

Grandson Ben’s journey began in 2014 when he was rushed first to Erlanger Children’s Hospital in Chattanooga, TN and then to Scottish Rite (Children’s Healthcare of Atlanta) in Atlanta, GA where he was diagnosed with dural AV fistula, a vascular malformation in his brain.  He was only three years old.  Although doctors at Scottish Rite diagnosed the condition, they honestly admitted they could not treat it.  At Emory University Hospital in Atlanta, doctors told the family that without treatment Ben would die and that they could do neurosurgery, but the odds were not good.  We were told that Ben had a 50% chance of suffering a stroke during surgery or that he could die on the table.

My readers who have been following Ben’s story know that Ben’s dad contacted Dr. Berenstein, the New York physician who pioneered the procedure that would save Ben’s life.  Dr. B. said Ben would not die, and the chance of his having a stroke was only 5%, not 50%.  Just after Ben’s fourth birthday, Dr. B. performed two endovascular surgeries, the first to place tiny platinum coils in the fistula, and the second to further close it off with medical grade “super glue.”

The annual check up a year later showed that the original fistula had reopened, and a new fistula had formed.  Dr. B. again performed surgery in what was described as a life-threatening situation.

Yesterday Ben (now six years old) underwent a cerebral angiogram as part of this year’s check up.  His mom reported that he was in good spirits before the procedure…

Before the angiogram
Ben and his dad before yesterday’s angiogram

 

The procedure lasted about two hours, and our little trooper was required to lie still for six hours afterwards…

In recovery

 

While Ben was in recovery, his parents received the good news. The original fistula is completely gone.  The blood flow has been re-routed.  The new fistula that was developing last year is gone as a result of decreased pressure in the brain…

Collage

 

BEN HAS BEEN GIVEN A CLEAN BILL OF HEALTH !!!  There is no need for anymore annual trips to New York unless additional problems arise. There is nothing more except for an MRI in five years!

Ben is healed
From left: Dr. Thomas Oxley, Ben’s mom (our daughter), Brave Ben, Dr. Alejandro Berenstein, and Ben’s dad.

 

Ben wants to go back to New York for a visit sometime in the future, and he already has expressed sadness that he will not be able to stay at the Ronald McDonald House, which has been his home away from home and has provided his family with so much love and support…

Ronald McDonald House

 

There is no way to express the gratitude we all feel, gratitude to Dr. Berenstein and his team for healing our little guy, gratitude to everyone who has kept Ben in their thoughts and prayers, and most of all gratitude to God for all He has done. One of Ben’s favorite Scripture verses sums up what God has done for this little guy:

 “For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.”   (Jeremiah 29:11 )

 

Soon after arriving at the Ronald McDonald House this week Ben went into the music room, picked up a guitar, and began to sing one of his favorite songs, “In the Eye of the Storm.”  Here is the YouTube video of the original recording of that song.  May it’s message comfort others as much as it has comforted our Brave Ben…

 

#Ben Strong       Soli Dei Gloria !

Encouraging news from Dr. B. and fun in New York

Ben had an appointment with Dr. Berenstein early this afternoon, and his mom posted this on Facebook:

Good news from Dr. B.

We continue to pray for an excellent report on Thursday!  In the meantime Ben is having great fun in New York.  His mom and dad are letting him choose what he wants to do, and he has kept them very busy.

They have eaten breakfast at The Green Kitchen…

Green Kitchen

 

And lunches at Bare Burger and at America’s first pizzeria, Lombardi’s…

Bare Burger

 

In Central Park, Ben rode the famous carousel…

Carousel in Central Park

And, Georgia boy that he is, he found a rock to climb!

Central Park 3

 

He wanted to visit Times Square…

And Grand Central Station…

 

And yes, faithful readers, he visited a fire station, Engine Company 44…

…where he received royal treatment!

 

Tonight, families staying at the Ronald McDonald House are being treated to a free bus tour of the city.  Then it’s back to the RMcD House for a good night’s rest.  Here’s Ben’s view from the family’s room…

Room with a view

#BenStrong    Soli Deo Gloria!

“Where we go one, we go all. We’re all in!”

Grandson Ben and his parents traveled from Atlanta to New York today for Ben’s annual checkup with Dr. Berenstein at Kravis Children’s Hospital.  Both parents have been worried sick because last year when they made this same trip for a checkup, Dr. B. found an abnormal blood flow in Ben’s brain and had to perform an emergency, life-saving surgery.  We all are hoping and praying that Ben gets a clean bill of heath this year.

Ben has been a little trooper through three endovascular brain surgeries in the past two years.  This little family has had a roller coaster of a time, and they’ve stuck together like glue.  As our daughter says, “Where we go one, we go all. We’re all in!”

Then and now

 

Another concern this year was the fact that they would not be able to stay at the Ronald McDonald House because it is undergoing major renovations.  All available rooms were reserved for children ages 0-3 with cancer.  For Ben, the Ronald McDonald House has been a highlight of these trips.  It provides him a place to play and children with whom to play and helps him forget for a while the reason he is in New York.  Last year Ben told me the hospital was like a “monster” to him, and the Ronald McDonald House was the one thing to which he looked forward.  For his parents, the House provides love and support during a very frightening time, and staying there helps defray what would otherwise be the exorbitant cost of lodging in a hotel for a week.  So, how to tell our little guy that he would not be going to the Ronald McDonald House?

By some miracle, still unexplained, everything worked out!  The social worker from Dr. B.’s office called to say that out of hundreds of families for whom she had tried to get a room at the House, Ben’s family was the only one to get in.  “I can’t wait to meet your son.  I hear he’s an amazing young man,” she added.  Dr. Berenstein himself told Ben’s dad, “This is just another small miracle that God has done for little Benjamin.”

So, prior to flying out early today, the family stayed overnight in Atlanta at a hotel overlooking the airport runways…

Room with a view

On the balcony

And Ben and his dad were able to swim in the hotel pool located right by the planes…

Swimming by the planes

 

My faithful readers know how Ben loves police officers and firefighters.  When he finally arrived at the Ronald McDonald House this morning he was excited beyond belief to find out that a New York City police officer was sitting just inside the door…

 

And the music room, which was being renovated last year, is open again!

In the music room

#BenStrong    Soli Deo Gloria!

Ben Is Getting National Media Attention !!

Two days ago I wrote about the attention being given to a Facebook video of 5-year-old Ben running a touchdown last May.  (That post can be seen here.)  The video was picked up by two national news organizations, and Ben’s story is now on webpages of radio and television stations across the country as well as on the CBS and ABC news websites !

He has the ball

The video that went viral was uploaded to Facebook last Saturday by the high school sports website MaxPreps.  It showed Ben running for a touchdown during the Murray County (GA) High School Green and White Game.  Because of Ben’s condition and the fact that he will never be able to play football, the Murray County team had given our little guy the opportunity of his life, to play with their team on the high school football field. (You can read about that game and see the local television news report here.)

Both CBS and ABC national news contacted Ben’s dad for interviews (and CBS contacted me).  Nothing has been broadcast on television, but both news outlets have done stories that appear on their websites.

The CBS story appeared last night and can be read here.CBS story

The ABC story appeared this afternoon and can be read here.

NBC storyThe original video that went viral has been seen on Facebook by over 356,000 people and has been shared by over 6,000 people.  We are beyond amazed and are so glad that Ben’s story has been an inspiration to so many!  Thank you, Murray County High School!!

God is good!  We are blessed!

#BenStrong  !!!

Heading Home

Woo hoo!  Happy, happy, joy, joy!  Ben was released from Mount Sinai St. Luke Roosevelt Hospital in New York yesterday (Sunday) morning after two brain surgeries within a week!

This is the final photo taken of him, with his mom, before he was released:

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The family returned to the Ronald McDonald House in Manhattan where they are staying for two nights before returning home to Georgia.

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Since his release from hospital, Ben has visited Times Square and the Hudson River waterfront at Hell’s Kitchen (sounds like a lovely place, doesn’t it?) where the USS Intrepid is docked and has taken the ferry to Liberty Island to see the Statue of Liberty.

Tomorrow (Tuesday), he and his parents are flying back to Atlanta and should be back in their Northwest Georgia home by suppertime.  We can hardly wait to see this smiling face again!

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A Happy Boy

Ben remains in hospital in New York but, while there, is enjoying playing in the children’s playroom.  In fact, his mom said they were in the playroom about 10 times today.

A few photos of a happy boy enjoying being a ordinary child again:

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Ben will be released from hospital tomorrow (Sunday), and he and his parents will return to the Ronald McDonald House where they will stay until they fly back home to Georgia.

“Super Glue” Surgery Tomorrow

Four-year-old Ben is scheduled for his second surgery tomorrow (Thursday, May 22). Dr. Berenstein will inject a type of “super glue” or “crazy glue” into the affected area of Ben’s brain in order to totally stop the abnormal blood flow and close off the area.

After a few more days in the hospital, Ben should be released on Sunday.  He and his parents will continue to stay in New York at the Ronald McDonald House in Manhattan until his follow-up exam the following Wednesday.

Our little man was in good spirits today even though he had to have an IV this afternoon.  He spoke on the phone with me and also asked his mom if they could phone his great grandfather (my father).  My dad was so excited when he answered his telephone and heard Ben’s sweet little voice say, “Hello, Papa.”

We continue to pray for another successful operation tomorrow.  All four of Ben’s grandparents plus my dad are in Georgia, and it’s not easy being so far away from this precious little guy.

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