Yay! Ben is okay!

 

Great news!  The results of MRI and the MRA scans on grandson Ben’s brain were excellent!  There’s no problem with the original fistula repair, and no new fistula has formed. Dr. Berenstein in New York reviewed over 50,000 images and found no problem. Yay!

Thank you, thank you to everyone who has kept Ben and his parents in your thoughts and prayers.

Originally, when Ben was 3 years old, it was a problem with his eye that led his parents to seek out medical care.  Ben was diagnosed with a dural AV fistula (a vascular malformation in the brain) which was causing pressure behind the eye.  His little life was in danger, and he underwent a visit to the children’s hospital in Chattanooga, TN, stays in two children’s hospitals in Atlanta, GA, and three surgeries in New York City by a world-renowned physician before the problem was corrected.  We are so, so grateful to Dr. Berenstein for saving Ben’s life and for continuing to follow up on Ben’s condition.

Recently, his parents noticed a difference in that same eye, and this is what prompted the brain scans.  Now that Dr. Berenstein has given Ben the “all clear” as far as the fistula is concerned, the next step will be an appointment with an ophthalmologist to have Ben’s eyes checked.

Again, thank you to all who have Ben in your thoughts and prayers.  I’ll keep you posted…

#BenStrong       #Soli Deo Gloria

A Surprise Package for Ben from New York’s Finest !!

A few days ago, Ben received a surprise package from the 20th Precinct of the New York Police Department. According to his dad, Ben literally was speechless!   He tore into the box and found inside the package an official NYPD hat, an authentic NYPD hooded sweatshirt, a NYPD baseball, and NYPD stickers.

NYPD gifts

 

There also was a handwritten note from Police Lieutenant Noreen Lazarus!  She is the officer who gave Ben one of her dress blue shirts last month when Ben visited the Precinct. That day last month was one of the most exciting and memorable in Ben’s life.  Officers from the 20th Precinct treated families staying at the New York Ronald McDonald House to a boat trip on the Hudson River and then cooked dinner for them.  You can read more about that day here.

The Shirt

Ben in the shirt given to him in June by Lt. Lazarus

We are honored and humbled that a member of the NYPD would take such an interest in our little Brave Ben here in Georgia and would send him a letter and a box full of gear.  I echo the words of Ben’s dad in saying to the NYPD, and especially the 20th Precinct and Lt. Noreen Lazarus, THANK YOU for taking an active part in the life of a little boy who idolizes each of you!

20th Precinct

#BenStrong   #Soli Deo Gloria

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

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!

“Fair and just in all he says and does”

“Ben is fair and just in all he says and does.  In his young life he has set an example for many to follow.”

This was the tribute given to our little man as he finished up his year in kindergarten!  He was honored both at his school’s awards ceremony and on the last day of school when he was chosen to represent all of the kindergarten classes and “walk the blue carpet” at the school’s end-of-the-year “rocket rally.”

An award and a hug

An award and a hug

 

Rocket Pride

Ben's cousin received an award, too, for setting a good example

Ben’s cousin received an award, too, for setting a good example

 

Walking the blue carpet (still shot from video)

Walking the blue carpet (A still shot from video)

 

We are so proud of Ben’s progress this year!

First day and last day

Now it’s on to first grade!

On to first grade!

 

In another week, Ben and his parents will be on their way to New York for his check-up with Dr. Berenstein at Kravis Children’s Hospital.  Please keep them in your thoughts and prayers.

Soli Deo Gloria !    #BenStrong

Two years out, Ben plays soccer and baseball and celebrates his sixth birthday

Facebook reminded me this morning that two years ago today grandson Ben, who was 4 years old at the time, had his first endovascular surgery to repair an AV fistula (abnormal vascular formation) in his brain. Here’s my Facebook post from May 19, 2014:

Grandson Ben came through today’s surgery just fine. There were 10 or more people on the medical team. Dr. Berenstein placed 18 coils (made of platinum and each about the width of a human hair, I read online) in the fistula in Ben’s brain to slow the abnormal blood flow. Ben is in pediatric intensive care and will have a second procedure done later this week (using medical-grade super glue) to stop the abnormal blood flow. It sounds like science fiction! We are very grateful for everyone’s prayers and for the world’s finest medical team. Please continue to pray for Ben as he goes through this second procedure.

A year ago when Ben returned to New York for an annual check-up, we were dismayed to learn that the repaired fistula had reopened.  My daughters’s post from June, 4, 2015:

Please keep those prayers coming. We just spoke with Dr B and the fistula has reopened. They are going into surgery now to repair it. It is life threatening.

Ben also came through that surgery just fine, and I am delighted to report that he is completing kindergarten, continues to excel in sports and just recently celebrated his 6th birthday.

After enjoying soccer last Fall, he is playing again this Spring in an indoor soccer program:

 

 

And he graduated from the T-Ball program last year to an actual baseball team in which he alternates between playing the position of catcher and playing in the outfield:

 

Ben celebrated his sixth birthday two weeks ago with an outdoor party and had great fun with his friends, family, and neighbors:

 

In two weeks Ben and his parents will make another trip to New York for his annual checkup with Dr. B. Please keep them in your thoughts and prayers.  We hope beyond hope that Dr. B. will find no problems and that Ben will not have to undergo another endovascular surgery.

Soli Deo Gloria !    #BenStrong

Spring Break with the Wild Man

A couple of weeks ago the schools in our area were out for a week of Spring Break.  We were able to spend the entire week with our precious Wild Man, as his dad had to undergo an operation on his foot, and his mom (after spending a day at home with dad) had to go to work.  The first few days were spent at our house, and then we made the two-hour drive to Ben’s house and spent the remainder of the week there.

While at our house Ben was able to visit and have lunch with his Poppy, his great-grandfather…

Ben and his Poppy on a sunny day

We made our usual visits to the old train…

At the old train

At the old train

And to the creamery where we enjoyed homemade ice cream…

Eating ice cream

Eating homemade chocolate ice cream made with organic milk

and Ben played underneath the giant cow…

Under the giant cow

Under the giant cow

Back at his house we took Ben to his physical therapy appointment, made cookies for the firefighters who are stationed at the firehouse nearby, and helped out his dad in whatever ways we could.  Ben, who has undergone three surgeries himself, did a wonderful job of helping his dad after the operation.

Here he is with his dad’s crutches.  What a difference in height!

With his dad's crutches

Ben’s dad is very tall!

Ben will be returning to New York in June for his yearly checkup and medical tests.  More on that later…  But in the meantime please keep him and his parents in your thoughts and prayers.

Soli Deo Gloria !    #BenStrong

How little radishes growing in the desert led to a treatment for vascular disease that saved Ben’s life

Radishes in the desert

This Facebook post from grandson Ben’s dad the other day was accompanied by an amazing video of Dr. Alex Berenstein, who is Ben’s doctor, speaking at a TEDMED event in 2010.

Dr. B., as he is affectionately called by his patients, is Director of the Pediatric Cerebrovascular Program at Kravis Children’s Hospital which is part of the Mount Sinai Health Systems in New York City.  The program provides treatments for vascular disorders and malformations, specifically malformations of the blood vessels of the brain in infants, children, and young adults.   Dr. B. is a renowned leader in the field of interventional neuroradiology and has received more 30 distinguished awards for his groundbreaking work. He has helped develop many of the crucial therapies for previously untreatable diseases, and it all started when, as an intern, he saw radishes growing in the Israeli desert.

berenstein_alejandro_6

Dr. B. has performed three endovascular surgeries on Ben to repair dural arteriovenous fistulas in the brain. We are so blessed that he took Ben as a patient when our little guy was only three years old and then performed the first operation shortly after Ben’s fourth birthday. You can read more about Dr. B. here.

Here’s the video (17 minutes long) of Dr. B. explaining how radishes in the desert led to the medical developments that have saved and changed the lives of countless youngsters.

As always, please keep Ben in your thoughts and prayers.  And also please remember his other grandmother who is undergoing cancer treatments.

Soli Deo Gloria !    #BenStrong