Diagnosed with Level II autism at 2 years old, now with leukemia. See how this little boy is fighting in a very big way.
According to the Oxford dictionary, the definition to the word “mighty” is:
might·y /ˈmīdē/ adjective “possessing great and impressive power or strength, especially on account of size”.
Brayden Wayne Johnson, who celebrates his 7th birthday on January 30th, displays his incredible might in a multitude of ways. He shows an immense power to bring smiles and laughs to all who meet him and he displays his strength in each and every hug he provides to all he loves. But, besides all of these talents comes another act and feat of strength and power.
Brayden, also affectionately known as “B-Man”, is diagnosed with Level II autism; a form of high functioning autism. Having been diagnosed at 2 ½ years old, Brayden was able to do many of the same functions that other kids could do, but was just non-verbal for the beginning of his developing years.
Brayden’s parents, Kara and Douglas Johnson, are Active Duty military parents. Douglas joined the Marine Corps in 2010 and, in 2012, he and Kara married. During his first deployment to Afghanistan, Douglas was unable to see the birth of his first born child and didn’t get the opportunity to even hold Brayden until July of 2013 when B-Man was already almost six months old.
Due to their military service, the Johnson family has been able to rely on a multitude of different programs offered to all military families who serve. One of those programs is the Exceptional Family Members Program. The EFMP is a mandated program that assists in a wide array of services from Adult Education to Family Child Care Child Development to Veterinary Services.
Trisha Bowers-Young is a representative of the EFMP who has assisted the Johnson’s in gaining assistance for Brayden and his autism diagnosis. Being non-communicative, Brayden has been able to attend Applied Behavior Analysis and his non-verbal behaviors have helped with him being able to become more communicative due, in part, to this program.
“She helps with everything involving Brayden”, Kara Johnson said about Bowers-Young.
After spending seven years at Camp Lejeune in North Carolina, the Johnson family was slotted orders to be shipped out to beautiful Hawaii. Kara had her second child, another boy, Cole in April of 2019. Life was going well, Doug was continuing his success in the Marine Corps, Kara was about to start school for the culinary arts, and Brayden was continuing to show improvements.
Before the change of duty station move to Hawaii, Kara and Douglas brought the family to the Spirit Lake area where both of them were raised. Spirit Lake holds both Doug’s and Kara’s families and is the birthplace of Brayden. They hold so many fond memories of the area, but one of their favorite destinations is the Lake of the Woods in northern Minnesota. The whole family including grandparents, aunts, and uncles were there in June enjoying their summer at the lake. Unfortunately, little Brayden fell and broke two of his teeth.
The family was referred to an oral surgeon in Sioux Falls and the teeth were fixed. Brayden, who is six years old until next week, handled the mishap like a true champion would, but there seemed to be some underlying issues. Kara remembers that Brayden wasn’t quite acting the same. He would play hard like any other six year old, but would become extremely lethargic and would lack a lot of the spunk that he normally had.
During baby brother Cole’s four month appointment, Kara had scheduled a time for Brayden to be assessed as well. During the visit, a blood draw was completed so that a count of blood cells could be done. The numbers they got back rose significant concern. Normal blood levels range in age and from lab to lab, but for an adult with a low count is approximately 1,000-1,500 and 500-999 is moderately low. Continuing on, a level at 200-499 is severely low and, finally, a number below 200 is life-threatening. Brayden was around 190.
“The doctor said that it could be a lot of things so he just wanted us to recheck later”, Kara said about the reasoning she received for the low blood count. She was told that it could have been a blood infection, a possibility after the Lake of the Woods injury. But, she was also told it could be cancer.
Brayden had been feeling ill for about five days before the initial blood draw and Kara knew something just wasn’t right. Luckily, Kara has some family members in the medical community. One of those family members is an aunt who is a Physician’s Assistant at a hospital in Wyoming and another is a cousin who is a doctor in West Virginia. The two of the family members conferred with each other and recommended that Kara and Doug take Brayden into the hospital again right away.
“My aunt did not like that we were waiting and thought that we should go back right away and recheck and that was on the 31st [of July] the next day”, Kara continued.
Kara took the advisement and brought Brayden to the emergency room at Lakes Regional Healthcare in Spirit Lake and this time, Brayden was shipped out to Sioux Falls, South Dakota by ambulance because Brayden’s levels had dropped yet again.
Arriving at Sanford Children’s Hospital, or “The Castle” as it is commonly referred to, doctors and other medical staff began to assess B-Man. Finally, around 10PM on July 31st of 2019, Doctor George Maher entered the room and sat down.
“I was already freaked out at the hospital. I kinda already assumed that he had cancer. When the doctor came in and told me that Brayden had leukemia, I don’t remember what happened after that”, Kara remembers. “The whole family was in the room and all I could do is look at my brother, Jac”.
A heaviness consumed the room. Doug, Kara, Cole and Brayden had just been dealt the biggest blow of their lives. A little, six-year old boy who had already been diagnosed with autism was now being required to battle one more thing.
“The doctor sat down and told us that Brayden has leukemia, but said this is what we are going to do to fix it. He is great. I love him. Fantastic guy”, Kara said about Dr. Maher. “He told us Brayden needs blood, Brayden needs platelets, Brayden needs all of this stuff to make him as healthy as he can be to get his port placed and to get the bone marrow”.
The official title of the type of leukemia that Brayden possessed is Acute Lymphoblastic Leukemia or “A.L.L.”. Brayden was about to enter a phase of his young life that would really show the immense power and strength that exists deep inside of him. This young fighter was going to need each and every bit of support from his friends and family in order to beat the illness too.
Obviously, Kara and the rest of the family was devastated. They had all just received some of the worst news a family could likely have especially in regards to such a young and already battle-hardened boy. The questions came pouring in from Kara to the doctor.
“My first question to him was, ‘Is my child going to die?’”.
She was told that the odds were good for little Brayden. Of those diagnosed with Acute Lymphoblastic Leukemia there is a 90-95% success rate. Although this did bring some sense of relief to Kara, she was still worried about whether her son may be in that 5-10% range who don’t make it.
“What if my child is that 10%”, Kara wondered. “[Dr. Maher] never really gave us the time to think negatively”.
Tears were flowing in the room, but everyone had the determination to not let Brayden feel the brevity of the situation. Whenever someone was close to breaking down in tears, they would leave the room to do so. The family wanted to encourage Brayden’s strength by displaying their own in front of him. It is a tall order to receive the diagnoses that Brayden has had in his life. But despite the difficult start to his life, Brayden refuses to allow the circumstances to bring him down.
That same week, Brayden was thrown right into the treatment to rid his body of the leukemia. That following Friday, Brayden received his port, a spinal tap, and bone marrow aspiration. On top of those procedures, Brayden is required to receive lumbar punctures where he is put to sleep and the staff performs these in order to see if there are any white blood cells, sugars, or if there are any levels of sepsis in his spinal fluid; all extremely invasive procedures.
“Honestly, Brayden has been the strongest person in this entire thing”, Kara says. “He pays no mind to the tubes when he gets his medicine. He is so remarkably strong; I cannot believe it”.
Christmas Eve of 2019, Brayden lost his hair. All the rounds of chemotherapy have taken a toll on his body and even when he had to march upstairs, with his whole body aching from the different medications and the rigorous therapy that he was enduring, Brayden continued to march on.
“[The medicine] makes everything hurt”, Kara says. “There are times where he had struggled up the stairs, but he still did it. Or, there were times where he was [hurting] just walking, but he still just did it”.
By the assistance of Bowers- Young with the EFMP and also due to the amazing support from the United States Marine Corps., the Johnson’s were no longer needed to move to Hawaii. In an odd and definitely unusual set of circumstances, the Corps provided Doug and his family permanent working orders to the Offutt Air Force Base in Omaha, Nebraska. This will aid tremendously in getting Brayden to the best treatments for his diagnoses.
The little fighter has a long path to tread and although he is experiencing extreme hardships, his smile and love continue on to show those watching that he is tough enough. At the beginning of the phone call to Kara, she had mentioned that the family is on house arrest at the moment. During these winter months, Brayden is in the most intense phase of his treatments. The family needs to make sure that Brayden stays as healthy as possible so that he may receive the treatments. Being that they live in a much colder climate now, the family is required to take measures to prevent Brayden from any exposure to illness forcing them to stay home most of the time.
During the writing of this story, it was learned that a local pub in the tiny town of Lake Park, Iowa found out about Brayden’s feats and needs. Eager to participate in the annual Winter Games celebration that happens around the community of Okoboji, Iowa, Johnny’s Pub of Lake Park will be participating in an event known as “Battle of the Bartenders”.
This year’s Winter Games and Battle of the Bartenders is slotted to begin on Thursday, January 23 at 5pm in the Barefoot Bar. Battle of the Bartenders has grossed more than $28,000 since it began in 2013. In the event, all 20 or more bars who are represented will be displaying their talents to the crowd. Those in attendance are asked to tip their favorite bartenders and the top three bars who have earned the most tips by the end of the night, will then split the proceeds raised to donate to a charity of their choosing. Johnny’s Pub aims at donating to “B-Man Strong” should they win.
Brayden is a powerhouse of love and attitude. His courage and determination to face the hardships of this world are more than what even I can say I possess.
B-Man is truly a mighty, little man.