“Remember to celebrate milestones as you prepare for the road ahead.” (Nelson Mandela)
And boom! Just like that our miracle boy has turned 9, has just completed his first state-mandated round of end-of-grade standardized testing in school, and by the end of this week will have completed grade 3. But the most important milestone marks 5 years since his diagnosis and surgeries.
When he was only 3 years old, grandson Ben was diagnosed with dural arteriovenous fistula, a rare vascular malformation in the brain. Just after his 4th birthday he underwent two back-to-back brain surgeries to repair the fistula, and the following year was again in a life-threatening condition that required a third surgery. We view the medical care he received and his recovery as nothing short of miraculous.
He has become quite a young man: very bright and excelling academically, a baseball/soccer/basketball/ playing – rock climbing sportsman, a wonderful son to his parents, grandson to us and his paternal grandparents, and cousin to his multitude of cousins. But most of all he is a kind, compassionate, loving person. We couldn’t be prouder.
He’s doing great, enjoying school, and is active in youth activities at his church. He just completed another round of physical therapy sessions and has a new “boot” which he wears on his left leg at night. But the best physical therapy he can get is sports, and he is a star player on his basketball team!
Thanks to everyone who follows Ben’s progress, and thank you for all your thoughts and prayers for our miracle boy.
A young man of good character. What parent or grandparent could ask for more?
Grandson Ben was honored recently at school in a “Blue Carpet Rocket P.R.I.D.E. Rally” for exemplifying Peace, Respect, Integrity, Discipline, and Excellence. (Blue carpet because his school colors are blue and white, and Rocket Rally because they are the Westside Rockets.)
We couldn’t be prouder of our miracle boy!
“Good character is not formed in a week or a month. It is created little by little, day by day. Protracted and patient effort is needed to develop good character.” (Heraclitus)
Grandson Ben, 8-year-old miracle boy extraordinaire, is playing soccer this autumn after a year’s hiatus from the sport. Last year he opted not to play soccer and concentrated only on basketball and baseball. But he’s back on a local soccer team, enjoying it, and scoring goals!
We are so grateful that our little guy (who underwent three brain surgeries at ages 4 and 5) continues to love and excel in sports.
Please join our family in sending out healing thoughts and prayers for another little boy, named Levi, who has been in the hospital for almost three months now suffering from the same problem Ben had, arteriovenous malformation in the brain. Levi, who is 10 years old, unfortunately had no symptoms and was not diagnosed until he experienced a severe brain bleed. His condition was touch-and-go at first, but he is now doing much better, although the prognosis for full recovery is not good.
Sporting new eyeglasses, grandson Ben began a new school year yesterday in Grade 3. It’s unbelievable that our little miracle boy who underwent three brain surgeries at ages 4 and 5 is now in the third grade at school.
(Note to my international readers: Here in the U.S., local school districts decide when their school year will begin and end. In most places, school starts anytime from early August to early September and ends in late May or early June, although there can be deviations even from that schedule. Here in the state of Georgia, most schools start in August. And as you can see from Ben’s attire, most schools do not have school uniforms.)
Ben had a busy summer, spending time at the beach with cousins and his dad’s parents, attending a week-long summer camp in the mountains, going on a mission trip with young people from his church, and in his “off-time” attending a summer day camp while his mom and dad were at work. He’s a happy guy who makes friends easily, and he seemed to enjoy every minute of his summer holidays.
We wish Ben much success in school this year, and once again, we thank everyone who has followed his story and kept him in your thoughts and prayers.
Ben and his dad
Ben and his mom, our daughter
Please join our family in sending out healing thoughts and prayers for another little boy, named Levi, who currently is in the hospital suffering from the same problem Ben had, arteriovenous malformation in the brain. Levi, who turns 10 years old next week, unfortunately had no symptoms and was not diagnosed until he experienced a severe brain bleed about 30 days ago. His condition was touch-and-go at first, but he is now on the road to recovery, although the prognosis is uncertain.
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.)
Grandson Ben’s dad reminded us that it was three years ago today that 6-year-old Ben’s medical journey began. This journey would see him diagnosed as a 3-year-old with dural arteriovenous fistula, a vascular malformation in the brain that was potentially fatal. And it would take him to several hospitals and through 3 brain surgeries. Today, he is a happy, healthy, thoughtful, kind young man who plays sports, enjoys school, and is about to celebrate his 7th birthday.
Here is what Ben’s dad posted today:
And here is Ben (with dark hair) with his dad and his friends Carter and Cameron: