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…
There still is no word on results of the MRI and the MRA on Ben’s brain. Dr. Berenstein’s office in New York received the images, but Dr. B. was out of town this week. When he returns he must review over 50,000 images, so we do not expect to hear anything now until next week. In the meantime, Ben has been at the beach with extended family and had an exciting tour of Tyndall Air Force Base which is nearby.
Tyndall Air Force Base is the home of the largest F-22 fighter wing in the Air Force. The fighter wing trains F-22 Raptor pilots and other personnel for worldwide assignments to combat Air Force units. It also organizes, equips, and trains a Raptor squadron for immediate worldwide rapid deployment. Ben’s dad arranged for a tour yesterday, and Ben was able to visit the air traffic control tower (where he actually cleared a pilot for takeoff), meet with F-22 Raptor pilots, attend a service dog demonstration, and eat lunch on the base.
At the air traffic control tower…
Clearing a pilot for takeoff…
After visiting the control tower, Ben met two pilots from the 95th Fighter Squadron. The 95th was first activated in 1942 and supported the Allied invasions of North Africa and Italy during World War II. After the war the squadron was assigned to the Alaskan Air Command and later to the Washington, D.C. area. In 1974, they were reassigned to Tyndall Air Force Base. Although they were inactivated in 2010 due to budget constraints, they were reactivated in 2013 and are the new operational F-22 squadron at Tyndall.
The 95th Fighter Squadron is known as the “Boneheads,” and their motto is “Death With Finesse.”
Ben posed with “Mr. Bones” …
and was given a 95th Fighter Squadron shirt as a souvenir…
Two pilots from the 95th Fighter Squadron showed Ben around an F-22 fighter plane and let him try on some of their gear…
And of course they posed for the obligatory photos…
Look at the legs on this kid! His doctor says that by the time he’s 17 years old, he will be 6’8″ (203 cm) tall!
Lunch on the base was highlighted by a number of souvenirs for our little guy, including this photo signed by some of the F-22 pilots…
To everyone at Tyndall Air Base who made this day so special for Ben, his mom would like to say, “What an amazing day for an amazing little boy! A big thank you to Tyndall AFB for allowing us this opportunity and treating us to something so special!”
Please continue to keep Ben and his parents in your thoughts and prayers as we all await the results of his brain scans.
The results of grandson Ben’s brain scans, which were done here in Georgia on Friday, were “over-nighted” by Federal Express to New York where Dr. Berenstein will view them. Over 57,000 images were taken during the MRI and the MRA. Now all we can do is wait, but we hope to hear results this week.
Before his brain scans Ben was in good spirits and played video games while waiting at the Children’s Healthcare of Atlanta facility…
Over the past 3 years Ben has had a number of brain scans, but this was the first time that he was not sedated. Here’s what his dad said…
Today was the 1st time Ben has ever attempted to have an MRI/MRA w/o anesthesia. The nurses & lab techs allowed me to pick him up & set him in the “tube”. After having multiple shields & guards placed over him, they told Ben that he “could not move for the duration of the scan”. Over the next hour, he was so uncomfortable that he started to cry but HE NEVER MOVED!!! After everything he’s already overcome, I shouldn’t be surprised by anything he does but this blew me away.
Ben’s dad is the youth minister at the church they attend and was scheduled to take the high school youth group to the Six Flags Over Georgia amusement park the day of Ben’s scans. He had to ask other people from the church to take the youth to the park and planned to join them after the scans. However, because Ben didn’t have to recover from sedation he was able to go, too, and was very excited…
And the youth group members welcomed Ben with open arms…
Most teens could care less about little kids. NOT MY YOUTH GROUP!!! All 23 ppl who went to 6 Flags today stopped what they were doing & gave Ben a huge hug as soon as they saw him. After lunch, he didn’t want to hang with me. Several members of the youth group offered to stop what they were doing & quit riding the “Big Boy” rides and instead, take Ben to the “Kiddie Rides”. I never asked them to do it….they wanted to!!!
Ben and his parents have now joined extended family on his dad’s side for a beach vacation. However, if after viewing the images sent to him, Dr. Berenstein finds an “emergent situation,” they may have to leave the beach and travel to New York. The waiting is the part that is so scary. As his dad says, “Your prayers have gotten us through the 1st stage of this test but there’s a much bigger hurdle in front of us now. Please DO NOT STOP PRAYING!!!”
Thanks to everyone who is keeping Ben and his family in your thoughts and prayers.
…but some problems have recently arisen, and his dad had to contact Dr. Berenstein in New York, the doctor who performed the procedures that saved Ben’s life. Dr. B. wants Ben to have an MRI scan (Magnetic resonance imaging) and an MRA scan (Magnetic resonance angiogram) as soon as possible. Those tests are scheduled for Friday.
It goes without saying that we are frightened, especially since Ben was doing so well and had been considered to be completely cured. Our family is asking for prayers for Ben and for healing thoughts to be sent his way. If the results of the scans are serious, he will have to make an immediate trip from his home in Georgia (or maybe even from Florida where he will be vacationing next week) to New York City.
My long-time blog followers know Ben’s story. For my new followers and casual readers, I will give some background:
Grandson Ben’s journey began in 2014 when, at the age of 3, 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. 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.
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 4th 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.
Last year Ben, then 6 years old, underwent a cerebral angiogram as part of the yearly check up. While he was in recovery, his parents received the good news. The original fistula was completely gone. The blood flow had been re-routed. The new fistula that was developing the previous year also was gone as a result of decreased pressure in the brain.
But now we don’t know what to expect.
Please remember Ben on Friday and send your thoughts and prayers his way.
He has had a good year since being pronounced cured and recently completed first grade in school and celebrated his 7th birthday. He is a bright little guy who enjoys school, plays sports, loves music, and has a strong personal religious faith.
A few photos taken by Ben’s mom as he finished up the school year…
And a few birthday photos…
This precious child means the world to so many people. We appreciate your healing thoughts and prayers, and we pray that the symptoms Ben has been experiencing will prove to be transient and not indicative of a recurring problem.
(Linking to the DP Challenge today. We need all the views and all the prayers we can get.)
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…
We made our usual visits to the old train…
And to the creamery where we enjoyed homemade ice cream…
and Ben played underneath 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!
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.
Last week Ben and his parents came to celebrate the Thanksgiving holiday with us. We are so very thankful to have this little man in our lives, and most especially when we think of all he has gone through.
Six months ago today, Ben was in “grave and immediate danger.” Medical tests revealed that the repaired AV fistula in his brain had reopened. Another brain surgery had to be done, and we were told that the situation was life threatening. He came through the surgery beautifully and in no time was up and playing in the hospital in New York.
Now six months later, he has completed a season of T-ball and a season of soccer. Tomorrow he plays in his first basketball game. Whoever thought this little guy would play sports after three brain surgeries? We are excited to be able to travel to see him play his second basketball game next week.
Ben’s dad, who has coached him in T-ball and soccer and also is the basketball coach, is one of the best children’s coaches I have ever seen. He posted this about Ben on Facebook today:
Perspective is an amazing thing!!!
Today started off crazy and work was chaotic as ever. I thought I was having a “bad” day when it hit me…………….
………6 months ago today, our precious baby endured his 3rd brain surgery. I will never forget the feeling of complete helplessness and utter fear that I felt when Dr. B told us that Ben’s life “is in grave & immediate danger” and that he would have to do another emergency brain surgery to save his life. After remembering that day, it made today seem like a breeze.
We were originally told that we would have to be back in NYC for a check-up TODAY but, because Ben is doing so good, we do not need to go back tillthe spring/summer of 2016. There is no way Katie Holloway & I could ever thank you enough for your constant prayer and support.
It is only by the grace of a loving God that Ben is still with us today and I’ll get to coach his 1st basketball game tomorrow.
Ben’s dad also referees high school football and basketball games, and Ben has learned the signals used by football referees. On Thanksgiving he enjoyed showing us what he has learned…
Thanks to everyone who reads these posts and keeps up with what is going on with our little trooper. Please continue to keep Ben in your thoughts and prayers.
While Ben’s parents were planning their upcoming December trip back to New York for more surgery for our little trooper, they received great news. Dr. B. called today and said that after studying the latest images from Ben’s recent MRIs, he sees no need for the surgery. The new fistula that had formed in Ben’s brain is now nowhere to be found!
In May, Dr. B. had said that the new fistula had formed because of pressure in the brain caused by the unexpected reopening of the original fistula. He further told Ben’s parents that the new fistula might heal itself after the surgery was done to repair the reopened original fistula. And it has!
Here’s what Ben’s dad said tonight:
The MRI looked so good that, unless Ben develops new symptoms, we do not have to go back to NYC in December for a six-month check-up. As long as Ben continues to improve and remains symptom free, we do not need to do anything until April or May of 2016.
Thank you all so much for your constant thoughts and prayers for Ben and our whole family. Please do not stop, they are definitely working!!! I am so glad God made our little boy Ben Strong!!!!
In the meantime, Ben’s story continues to make its way around the world. Not only has his story appeared on major news websites here in the U.S., as well as on BuzzFeed and many inspirational websites, but it also is showing up on websites around the world. Here’s a sampling:
A Spanish language website in the U.S.
Our family’s hope is that Ben’s story will be an inspiration to other families with a child diagnosed with dural arteriovenous fistula. As a sports story, we hope that it will show how a high school football team in a little town in Georgia made a child’s dream come true. And for everyone who reads Ben’s story or sees the “viral video” or the news broadcasts out of Atlanta or Chattanooga, we hope that Ben’s courage in falling down and getting up, and falling down again and getting up again, will be an encouragement to “keep on keeping on” towards whatever goal is in sight.
Our little guy, Ben, certainly is well-loved by all who know him, and he has received a lot of “football love.” His dad is a high school football referee, and dad’s referee buddies have been very supportive of Ben as he has gone through multiple brain MRIs and surgeries. The Murray County (GA) High School football team, in their annual Green and White Game last Spring, provided Ben with a full uniform and let him run a touchdown, an event that was covered by a local television news team. You can read about that here.
This school year’s high school football season is just beginning, and many teams are playing pre-season games right now. Last night, Ben’s dad officiated at a pre-season game and then posted this on his Facebook page:
(Ben’s dad is the tall guy in the back.)
Thanks to everyone who reads my posts about Ben. Please keep him and his mom and dad in your thoughts and prayers.
Yesterday while his classmates were meeting their kindergarten teacher for the first time and getting ready to begin another school year, Ben and his parents were at the Children’s Healthcare of Atlanta facility in Kennesaw, GA for more brain scans.
I’ve noted here before that Ben will be starting physical therapy to help with the lost range of motion in one foot. In July, while he was on his summer family holiday at the beach, that lost range of motion became severe, and he woke up one morning having trouble walking. His parents were understandably very upset and contacted Dr. Berenstein, Ben’s doctor in New York. Dr. B. felt that an MRI on the brain was in order.
In spite of the temporary difficulty, Ben had a wonderful time at the beach.
After returning home, Ben met with a doctor and a physical therapist at the children’s hospital in Chattanooga, TN. He was given stretches to do (which greatly improved his range of motion), but the doctor there also felt that an MRI should be done.
So yesterday, Ben was put under anesthesia for what seemed like the one hundredth time, and scans were done both with and without contrast dye. His mom told me that about 1800 images were taken, and a CD containing the images will be sent to Dr. B. in New York. Needless to say, we are hoping for good results. If the scans show that there are no new fistulas in Ben’s brain (other than the one that will be repaired in December) and no problems with the repairs already performed on the original fistula, then we can rest easier about the foot problem.
After the MRI, Ben asked his parents to take him to his favorite place to eat, Chuck E. Cheese’s, where he could eat pizza and have some fun playing as well…
Ben lived the first three years of his life with a dural AV fistula that was undetected, and it did cause pressure in his brain and probably caused neurological damage. Now as he grows, his muscles don’t grow as fast as his bones, and we are seeing that lost range of motion. We pray that the stretches and physical therapy will take care of the problem. He was able to run and play T-Ball this past Spring, and he is signed up to play soccer which starts soon. His dad will be the coach of his soccer team and will keep a close eye on him.
And today Ben began kindergarten! Today is Friday and yes, schools around here begin at the end of the week to give the youngsters a chance to get acclimated to the teachers, classmates, and schedule before beginning in earnest. Our little guy is attending the same school where he attended state-funded pre-K classes last school year, so he already is familiar with things there. His mom said he loved his first day of kindergarten!
The past couple of days have been very worrisome. Ben’s medical tests began shortly after 9:30 Thursday morning. He was scheduled to have an MRI and an angiogram, with testing to last a minimum of four hours.
However, once the tests were underway they revealed that the fistula in his brain (the one that had been repaired a year ago) had reopened. Ben was admitted to the hospital, and his mom notified us that, “They are going into surgery now to repair it. It is life threatening.” Once again, Dr. B went in through a vein in Ben’s groin and inserted tiny platinum coils, each only as wide as a human hair, into the fistula in Ben’s brain. It was just after 6:00 p.m. when Ben came out of surgery. An extremely long day, but the operation was a success!
Our little guy has been bolstered by so many prayers and positive thoughts from around the world, and his cousin created an inspirational poster for him to keep by his bedside.
Being in the hospital certainly isn’t fun and games for anyone, especially not for a 5-year-old, but Ben was encouraged to play in the hospital playroom before being discharged today.
And now, only two days after the operation, Ben is out of the hospital and back at the Ronald McDonald House! Understandably, he has had a hard time, but if he feels up to it a New York Yankees game is in the works for tomorrow, and the family hopes to fly home the following day. Another New York trip will be forthcoming in about 8 months, as Dr. B. did find an additional fistula that needs to be repaired. However, it is not causing any symptoms or problems, and Dr. B thinks that it may go away or be greatly decreased by that time due to the lessening of pressure in Ben’s brain that will result from this most recent surgery.
As always, please keep Ben and his parents in your thoughts and prayers. We appreciate every good thought and every prayer.