Benson Strong

Benson Strong Benson was diagnosed with an inoperable Low Grade Diffuse Brainstem Glioma at 2 Years old. This page was created to share updates about Benson, his journey, as well as share love and support for him and his family! #BensonStrong

Our sweet 2 year old boy, Benson, was diagnosed with an inoperable Brainstem tumor early September 2017. Pathology showed that his tumor was a Low Grade Glioma, however after complications with surgery for his Port-a-cath we have been admitted into the Pediatric ICU @ Childrens Healthcare of Atlanta. We wanted to create a page to share updates on Benson and let all of you see how #BensonStrong this kid is. We love you all.

Operating as usual

I think it’s safe to say Benson CRUSHED Kindergarten! Today was officially his last day of school and this boy has grown...
05/26/2021

I think it’s safe to say Benson CRUSHED Kindergarten! Today was officially his last day of school and this boy has grown so much this year ✨He was so lucky to have an amazing teacher, parapros and staff who absolutely allowed him to thrive at Kennesaw Elementary School!

Benson also got his MRI results back yesterday and his tumor is stable 🎉🎉 We got the amazing news that he will move from MRI every 3 months, to MRI every 6 months and into a maintenance phase. This will be incredible because he will be fully sedated for MRIs until he is old enough to lay still for the 60-90 min scans (which probably won’t be until he is a teenager).

Anyways, we are jumping into summer and the boys are so excited to be back at Aurora Day Camp, the pool, playing hours of video games and chillen out ☀️☀️☀️

I think it’s safe to say Benson CRUSHED Kindergarten! Today was officially his last day of school and this boy has grown so much this year ✨He was so lucky to have an amazing teacher, parapros and staff who absolutely allowed him to thrive at Kennesaw Elementary School!

Benson also got his MRI results back yesterday and his tumor is stable 🎉🎉 We got the amazing news that he will move from MRI every 3 months, to MRI every 6 months and into a maintenance phase. This will be incredible because he will be fully sedated for MRIs until he is old enough to lay still for the 60-90 min scans (which probably won’t be until he is a teenager).

Anyways, we are jumping into summer and the boys are so excited to be back at Aurora Day Camp, the pool, playing hours of video games and chillen out ☀️☀️☀️

05/14/2021

Benson struggled with his oncology appointment last week, and also saw psychology, endocrinology and pre-op for his next MRI. We played this game “guess what face I’m making under my mask” and also basketball with torn up pieces of paper from the table.

Benson can have a hard time processing and expressing his feelings and for me especially become very difficult. He was turning the lights on and off when the doctor was talking, crying, hitting me, and trying to run away. Some days his behavior is challenging, but I try my best to give him grace. I understand these appointments are over stimulating, bothersome and not something a 6 year old boy wants to do. At the end of the day, he is my superhero and I just do my best to help him acknowledge and process his emotions.

Keep us in your thoughts and prayers next week, Benson has his MRI at 6 am Monday morning. Scanxiety is always real, but hopefully we will be in and out and get some good results 💪🏼

Benson has been doing awesome lately, he seems to be getting stronger and stronger by the day. We have been going on sma...
05/04/2021

Benson has been doing awesome lately, he seems to be getting stronger and stronger by the day. We have been going on small hikes and its truly amazing to see his endurance improve so much over the past few weeks. He is able to make it about 1.5 miles and last week over some pretty tough terrain.

We did a long appointment this morning and saw endocrinology, psychology, oncology and pre-op for his MRI in two weeks. Appointments like that make me so thankful that we will finally be entering into a maintenance phase. We should hopefully be able to start going to MRIs every 6 months instead of 3 🙌🏼

Otherwise, Benson is wrapping up his kindergarten year strong and excited for the summer. The boys are eager to get back to Aurora Day Camp, the swimming pool and so many more adventures 😎

Benson has been doing awesome lately, he seems to be getting stronger and stronger by the day. We have been going on small hikes and its truly amazing to see his endurance improve so much over the past few weeks. He is able to make it about 1.5 miles and last week over some pretty tough terrain.

We did a long appointment this morning and saw endocrinology, psychology, oncology and pre-op for his MRI in two weeks. Appointments like that make me so thankful that we will finally be entering into a maintenance phase. We should hopefully be able to start going to MRIs every 6 months instead of 3 🙌🏼

Otherwise, Benson is wrapping up his kindergarten year strong and excited for the summer. The boys are eager to get back to Aurora Day Camp, the swimming pool and so many more adventures 😎

03/26/2021

Nothing like some fresh spring air, windows rolled down, and Elton John 💕 Side note: This was filmed in a parking lot, and just too good not to share.

It's been a little while since an update.Benson has been doing amazing, he spent 3 weeks with his Granny and Grandpa and...
03/06/2021

It's been a little while since an update.
Benson has been doing amazing, he spent 3 weeks with his Granny and Grandpa and came back SO ready for in-person school! His teachers are saying that he is excelling in school and having so much fun!

Benson's last MRI showed significant shrinkage, it was so exciting to see the images from his doctor. The plan right now is just to stay on the targeted therapy he has been on long-term. The scary thing with that is that the longest any child has been on these medicines is somewhere around 6-7 years. No one really knows the long term effects of treatment, however there does seem to be an increased risk of secondary cancers the longer you are on it.

The medicine has also made Bensons hair SO curly! We are working every day to learn how to take care of his new curly hair. I also saw today his two front teeth growing in! We are thankful that he is such a happy boy, growing everyday, getting stronger and thriving!

It's been a little while since an update.
Benson has been doing amazing, he spent 3 weeks with his Granny and Grandpa and came back SO ready for in-person school! His teachers are saying that he is excelling in school and having so much fun!

Benson's last MRI showed significant shrinkage, it was so exciting to see the images from his doctor. The plan right now is just to stay on the targeted therapy he has been on long-term. The scary thing with that is that the longest any child has been on these medicines is somewhere around 6-7 years. No one really knows the long term effects of treatment, however there does seem to be an increased risk of secondary cancers the longer you are on it.

The medicine has also made Bensons hair SO curly! We are working every day to learn how to take care of his new curly hair. I also saw today his two front teeth growing in! We are thankful that he is such a happy boy, growing everyday, getting stronger and thriving!

01/20/2021

Benson had MRI early this morning!

He had a little bit harder time coming out of anesthesia because he was SO sleepy and without being fully awake afterward his oxygen stats always go in the wrong direction quickly.

Benson’s oncologist called me on the way home (which I assumed could only mean bad news). Much to my surprise is doctor was just in SHOCK. He said Benson’s scans were remarkable, it was almost like his tumor was gone! He knows it’s there, but he had to actually look for it. This is such amazing news, we took a chance a year ago to start a new oral chemo and are just amazed at the outcome 💕

Benson has been moving through this month excited for Christmas! We were lucky to have Santa land in our neighborhood la...
12/10/2020

Benson has been moving through this month excited for Christmas! We were lucky to have Santa land in our neighborhood last weekend and even if Benson was too shy to tell him what he wanted, I told him Santa always knows. My guess is, it is everything Baby Yoda. 😂

Otherwise, we made a quick decision this week to move the kids back to virtual learning through the end of the year. They have had cases popping up in their school quickly, and thankfully they haven’t had an exposures but it was getting to close for comfort. They are sad they don’t get to see their friends everyday, but we are hanging on to the fact that we have 6 more days until Winter Break!

We are headed to Elijay for the weekend for a little rest and relaxation which is much in order. This year sure feels different, normally we are popping in and out of Christmas parties every weekend! It does make me sad we are missing so many of our friends and family but we’re hopeful next year will be different! We love you all very much!

Happiest 6th Birthday to our sweet Benson!!Benson’s amazing teacher sent me this picture from school today and it melted...
11/12/2020

Happiest 6th Birthday to our sweet Benson!!
Benson’s amazing teacher sent me this picture from school today and it melted my heart. Parson ran over to give his little brother a hug for his birthday 🥰🥰

It’s hard to believe our little boy is 6 today, but also harder to think of how much he has endured during his very short lifetime. He’s my superhero forever! #bensonstrong

It’s been a while since I’ve updated! Benson has been doing well, we have had a great month!  We enjoyed Fall Break at t...
10/27/2020

It’s been a while since I’ve updated!
Benson has been doing well, we have had a great month! We enjoyed Fall Break at the beach, started back to school in-person, MRI, and are for sure loving the cooler weather!

Benson’s MRI results came back stable, the report mentioned some possible new tumor signal towards his auditory canal but without that being certain we are happy for good stable results.

He is also enjoying being back in person at school. His teachers say he is such a joy to have in class and so friendly with his classmates. I started dropping the boys off at school in morning instead of taking the bus because Parson loves walking Benson to his class 🥰

We are looking forward to some Halloween fun this weekend and Benson is counting down the days until his 6th Birthday in November!

One day at school, next day at MRI! Benson was up at 4:30 this morning to make it to our 6 AM check in for MRI at the ho...
10/07/2020

One day at school, next day at MRI!
Benson was up at 4:30 this morning to make it to our 6 AM check in for MRI at the hospital!

His scans take about 2 hours to do brain and spine with contrast, so they think it will probably be a few years before he will be able to tolerate that awake so for now he still goes under general anesthesia every scan.

He was very upset going back, but they let me be with him right as the breathing tube came out and he was waking up which helped calm him so much! He asked for Parson right away (which was easy to accommodate because Parson was calling me every 10 minutes for updates 🤪).

Anyways, he did awesome! He is back home and back to gaming and will take it easy for the rest of the afternoon 🥰

Benson had an amazing First Day of Kindergarten! He said that it was way better than he thought, his teachers are the be...
10/05/2020

Benson had an amazing First Day of Kindergarten! He said that it was way better than he thought, his teachers are the best, eating in the cafeteria is the coolest thing ever, he doesn’t need his walker anymore and he made a friend who played a racing game with him 💕

10/03/2020
Pediatric Brain Tumor Foundation

Pediatric Brain Tumor Foundation

⭐️ To provide more memories like these for kids with brain tumors, as well as fund impactful research and family support programs, please donate at https://tiltify.com/@davemaysjr/cure-the-kid.

All week, the #PBTFGameON launch event has brought together members of the video game community and families impacted by a child's brain tumor diagnosis to livestream games and share their experiences. Since COVID-19 has kept us physically apart, this virtual time together has been especially meaningful.

Today, we're bringing together four brain tumor survivors to play Fortnite. From all across the country, Stars Nicholas, Evan, Benson and Parson would have likely never met if it weren't for their love of gaming bringing them together.

While fundraising is a crucial component of our PBTF GameON program (you all have raised more than $78,000!!), so is building connection and a thriving community of support for our Stars. Thank you to all of the streamers, sponsors, supporters and families for making this possible!

If you or your family would like to get involved, email us at [email protected].

09/23/2020

Just over here enjoying the beautiful weather and blowing away some wishes to Mother Nature 🍁🍂 #childhoodcancerawareness #superhero

That feeling you get when you see your cousins for the first time in 8 months 🥰 We took a quick trip up to North Caroli...
09/14/2020

That feeling you get when you see your cousins for the first time in 8 months 🥰 

We took a quick trip up to North Carolina this weekend and got some much needed giggles and cousin time.

Today marks the 3 year anniversary of Benson’s “Diagnosis Day”. I can’t even fathom how we comprehended the news we got ...
08/30/2020

Today marks the 3 year anniversary of Benson’s “Diagnosis Day”. I can’t even fathom how we comprehended the news we got that morning when they told us Benson has an enormous mass on his brainstem. We had Neuro Surgeons telling us our 2 year old may only have months to live. Life swirled around us like none of it was our reality.

We spent time tonight as a family celebrating how far he has come in three years, acknowledging the hard times we have all been through during this journey and telling the bad guy how much we just flat out despise him. Here’s to the strongest boy I know who fights that bad guy everyday 💪🏼💪🏼 #bensonstrong #oursuperhero

Benson started back to school yesterday with his first day of Virtual Kindergarten! School virtually has its challenges ...
08/18/2020

Benson started back to school yesterday with his first day of Virtual Kindergarten!

School virtually has its challenges for sure, but today Benson started breaking out of his shell little by little! He told his teacher the part of the day that made his heart happy was dancing 🥰

We received some pretty amazing news this morning at Benson’s Appointment! The MRI results showed significant shrinkage ...
07/07/2020

We received some pretty amazing news this morning at Benson’s Appointment!

The MRI results showed significant shrinkage of his tumor after 6 months on his target therapy medicine. The image to the LEFT are his scans from last month, and the image to the RIGHT are from October of last year. His tumor is diffuse through the brain, so it shows up cloudy on his MRI. I told Benson it kind of looks like a ghost. As you can see, his MRI from last month is WAY clearer!! He also had shrinkage from the spine and thankfully everything that grew last year shrunk as well! We are so excited with the results and only see more good things coming this boys way 🥰 Our superhero!

06/23/2020

Benson had his MRI today, we had to be at the hospital at 6 AM. He was excited Parson got up early to play video games with him before he went back for his scans. Hoping we get some good results in the next few days 🤞🏼🤞🏼

Mommy was brave and gave this kid a haircut last night 😂😂 Things have been pretty uneventful over here. We have been enj...
05/30/2020

Mommy was brave and gave this kid a haircut last night 😂😂

Things have been pretty uneventful over here. We have been enjoying summer break and slowly seeing some of our family for the first time in months. Benson has loved spending time with his cousins and has also been working on learning some of the Fortnite dances. I often times catch him in his room practicing a dance over and over until he gets it right.

The boys start their virtual summer camp in the coming weeks with Aurora Day Camp and Benson has his next MRI scheduled for late June. Otherwise, we are just welcoming the lazy days of summer and enjoying the free time 🌿🌿

This morning we got out before the rain and showed our support for #IRunWithMaud 💪🏼Benson has been loving quarantine, he...
05/08/2020

This morning we got out before the rain and showed our support for #IRunWithMaud 💪🏼

Benson has been loving quarantine, he is definitely a homebody and having school and therapy virtually fits into his video game schedule.

We have been spending some time outside, but with that I have noticed his skin to be much more sensitive the sun and burning/blistering very quick. The skin on his arms is very much like sandpaper and his doctor said we need to start bleach baths. He has also developed some thick blisters on the bottom of his feet this past week, they only bother him when he’s picking at them so trying to let them run their course and hopefully heal quickly. These are the main side effects we’ve seen on his new meds, oh and his hair starting to turn curly! We are thankful the side effects are pretty minimal right now and hoping for good news on his next MRI in June!

Benson’s MRI was cancelled last week, but we still have our monthly appointment with his oncologist. The hospital was gr...
04/07/2020

Benson’s MRI was cancelled last week, but we still have our monthly appointment with his oncologist. The hospital was great screening everyone who walked in, and the oncology floor also did further screening. Benson has been a little junky so they have him wearing a mask, which he kept on for maybe 10 minutes. Hoping whatever he has brewing passes quickly 🤞🏼

Thankfully I am feeling better and was so thankful my covid 19 results came back negative. We have been taking it easy inside, playing games, baking banana bread, and getting outside in the fresh air as much as we can. Of course Benson loves the social distancing, he says he would just like to play Fortnite all day everyday like a true gamer 🤣

We are thinking of all of you and hoping you are staying well physically and mentally. Love you all.

Hey friends! We hope you all are hanging in there and staying safe and well.  We are on Week 2 of Social Distancing whic...
03/26/2020

Hey friends!
We hope you all are hanging in there and staying safe and well. We are on Week 2 of Social Distancing which has included Benson doing his Pre-K school work and some therapies from home. He is loving every minute of it 🤣

Unfortunately this picture is from last week. I started having some symptoms very similar to what we are all hearing on the news, including some pretty high fevers and coughing so I’m currently quarantined in the bedroom. I was tested yesterday and awaiting results. Hopeful they are negative.

Because of everything going on, including me feeling under the weather Benson’s doctors decided to delay his MRI that was scheduled for Monday. We are all hopeful that Benson will stay well through all of this craziness.

Please continue to keep us in your thoughts 💕

Love, Kairsten

It’s been a long time since our last update! Things have been relatively quiet here.  Benson is taking a break from ther...
03/12/2020

It’s been a long time since our last update! Things have been relatively quiet here.

Benson is taking a break from therapies and dropped down to part time in Pre-K. Over the past year he has really had a hard time regulating his emotions and when he doesn’t want to do something he just absolutely won’t. I am happy to give him some grace and know all of us deserve to rest and recharge.

Thankfully we got some very valuable insight from his neuropsychologist, Benson’s tumor does cause him to have interference with the way he processes his emotion and behavior. It’s hard for him to work through and issue, which a lot of the time turns into non verbal tantrums. I have been working with some of the tricks the psychologist recommended with visual incentives (like stickers, that lead to a bigger toy after collecting 10). His oncologist who saw him this week said whatever I’m doing is working, he was able to assess Benson more this week than he has all year. It will still be a long process but it’s baby steps.

His next MRI is March 30th and we are hoping for some good news with the new drug he’s been on for about 2 months! The only side effects he has had is some blistering on his face from sun exposure and some more sleepiness than usual. We are so thankful that the side effects have been minimal, because for some kids that is not the case.

Benson has been walking more and more everyday, he often times goes without his walker now and even participated in an Aurora Day Camp fun day where he enjoyed an afternoon at gymnastics! It was so cool to watch him WANT to get up on the balance beam and rock it.

Will be sure to send an update after MRI, but for now here’s a picture of him hiding from his neuropsychologist a few weeks ago 🤣

Love you all 💕 #bensonstrong

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I had a brain tumor when I was 4 and 5 years old. I am now a month away from 69 years old. That was a miracle back then! Everyone prayed for me as I will pray for you Benson! ✝️❤️
Hey girl! I have two “Strong like mom” cat&jack from Target t shirts in size XS and Small boys. I’d love to send them to you if you’ll PM me your address. I saw you were looking for one a while back!
#BensonStrongintheDR!!
Truly awesome to see y'all at the party today! We hope everyone had an amazing time and wish all of you wonderful guys a Merry Christmas!
Please read Benson's story here. Please SHARE this link on your wall. #BensonStrong #CancerStinks