About Braxton's Buddies

At age 3, he started complaining that his heart was hurting and we ended up in the emergency room where

he was first looked at for a head injury and they discovered he had Premature ventricular contractions. We

immediately started on medication for that whole year. The medication helped to keep things steady. Every

few months now he gets a heart monitor that he wears for three days to see how things are changing and

to check the burden on his heart. Which since starting medications for a year to help control it and staying

away from trigger foods/drinks. He has improved. Last year he got sick and ended up having a febrile

seizure and they noticed the burden on his heart increased slightly but not too concerning. So he is being

monitored continuously for changes. He no longer has to take the medication, but now he gets monitoring

done at the pediatric explorer specialty clinic u of m to check his heart and he sees a neurologist twice a

year for his febrile seizure diagnosis. Doctors believe that as he gets older his PVCs may be a childhood

thing, but even if it doesn’t go away, there are alternatives and solutions to help.  He loves to play games with his big brother and help clean the house with mom. He enjoys Friday family movie nights and reading books.

Saylor was diagnosed with Ewing Sarcoma, which is a type of bone cancer in 2019. She had a tumor in her

left humerus (upper arm bone). Thankfully it was caught in time, and her cancer had not spread anywhere

other than her left arm. At the time she was diagnosed she was only 2 years old. Saylor immediately began

chemotherapy at Masonic Children's Hospital.

Most of the chemotherapy Saylor needed was inpatient, so she spent 2-3 weeks every month in the

hospital receiving treatment. In March of 2020, Orthopedic surgeons attempted to remove Saylor's tumor,

and replace it with a donor bone. Unfortunately this surgery was unsuccessful, and then in order to remove

all of her cancerous bone she would need a complete left arm amputation. So, in April of 2020 Saylor

underwent another surgery to amputate her arm, removing her entire left arm, and left shoulder joint. The

next few weeks and months were spent adjusting to life as an amputee and learning how to accomplish

everyday tasks with just one arm.

After her surgeries Saylor continued chemotherapy until September of 2020 when she completed

treatment, and her final scans showed no evidence of disease. Since completing treatment Saylor has

enjoyed being home with her family, playing with her brothers, joining dance and soccer, and spending as

much time as she can outside. She has not let her amputation limit her, and she is able to do anything she

sets her mind to! She truly is a light and an inspiration to all those around her that her differences do not

limit or define her.

Although an amputation was not how we expected her story to go, we are thankful for the healing that she

has had, and that now three years later she is still cancer free!  Saylor now enjoys playing outside, riding her bike, roller blading, and has joined soccer and dance. She

loves to move and stay busy! She will be starting 1st grade this Fall.

In August of 2022, Noah was diagnosed with a tectal plate glioma which is a rare low-grade, generally benign, inoperable brain tumor on top of his brain stem. He presented with a whooshing sound in one ear which lead to finding severe hydrocephalus that the tumor was causing.  Noah immediately underwent an endoscopic third ventriculostomy (ETV) at Masonic Children's Hospital.  The surgery has been successful to treat the hydrocephalus but Noah will continue to have appointments every 3-6 months at Masonic to monitor his tumor. If growth causes symptoms, his team of doctors will find the best treatment plan for Noah. 

Noah is a sports enthusiast!  He loves playing basketball and baseball.  Although he doesn't play organized football, it is one of his favorite sports.  His favorite teams are the Vikings, Chiefs and Warriors.  He never misses an opportunity to watch Mahomes,  Jefferson & Curry. He enjoys playing with friends and making sports videos.

Noah thrives in school.  6 months after surgery, he placed first in a Math Masters competition.  This boy is resilient - he does not let his diagnosis define him!

After many years of prolonged illness and hospitalizations, Jace received a diagnosis in 2019. Jace has 2 very rare genetic mutations. He has a diagnosis of TRAPS which is an autoimmune disease found in less than .004% of the worlds population and common variable immunodeficiency which is uncommon in pediatric patients. Both diagnoses are lifelong and are treatable with monthly infusions and injections, but there is unfortunately no cure. 

Jace loves playing baseball, acting in theater, attending Gopher football games, decorating for holidays, visiting waterparks and helping others! 

Jace is looking forward to watching Harrison Phillips play this season. He is Jace’s favorite Vikings player! Fun fact, one of Jace’s caretakers is Harrison’s aunt, Deena!

Emily was born with Severe Protein C Deficiency. It is a very rare blood clotting disorder that only effects 1 in 4 million newborns. She suffered a grade 4 brain bleed before she was born and quite a few other clots in her short little time that have landed us in the hospital. She is our wonder woman! Keeps on fighting! She receives twice a week Protein C Infusions at home on a pump, as well as daily Xarelto to help her not clot! She spent 2 months in the NICU and is always at Masonic for monthly hematology checks. She will always have this disorder and will have a lifelong journey at Masonic Hospital for it. But she doesn't let her diagnoses get her down! She is a spunky, happy little girl! 

She loves her baby shark, wheels on the bus and itsy bitsy spider! She loves to run and play! She is a hugger and a lover! 

We cannot thank Masonic Children's Hospital enough! Without them, Emily would not be here today! They saved her life and continue to help make her life as great as possible! They help us navigate this rare disorder with ease! 

Malik has type 1 juvenile diabetes. His first visit was December 3, 2018.  Malik continues to be under the care of the doctors at M Health Fairview Masonic Children's Hospital Discovery Clinic.

Malik loves football, basketball, movies, hanging out with friends and family, amusement parks and jumping places, traveling with mom and other family and friends.  WWE is his all time favorite thing and he collects all WWE, AEW and Marvel action figures.

From the day Charlie was born, he suffered from chronic abdominal pain. He screamed round the clock for the first six months of his life, while struggling to eat and gain weight. Doctors believed at that time that Charlie suffered from a severe milk intolerance. Around the age of 3, Charlie was first hospitalized for severe pain and vomiting. After a second hospitalization for the same symptoms shortly after, doctors determined that Charlie suffered from chronic pancreatitis, long-term inflammation of the pancreas, one of the body’s most vital organs. 

In 2014 alone, Charlie spent over 70 days in the hospital, spent almost 2 weeks in the ICU, relied on daily narcotic pain medication, went to the operating room more than 13 times, was flown via air-ambulance from Omaha to the Mayo Clinic in Rochester once and went 6 months with almost nothing to eat or drink orally. The pain Charlie suffered from daily was unimaginable. After the Mayo Clinic had exhausted all their options, Charlie was then sent to the University of Minnesota in Minneapolis for one last treatment option, a Total Pancreatectomy and Islet Auto Transplant. Not only was this our last treatment option, at the time Charlie was one of the youngest patients in the world to undergo this major surgery. On August 29th, 2014, Charlie underwent this experimental, 12-hour transplant surgery in which doctors removed his pancreas, spleen, gall bladder and duodenum (part of his small intestine). His insulin producing islet-cells were then harvested from his pancreas and transplanted back into the portal vein of his liver in hopes that he will not be an insulin dependent diabetic for the rest of his life.

Today, Charlie is living his best life as an active, “healthy”, 13-year-old boy. He attends middle school, plays basketball, and enjoys life outside of the hospital. Next year we look forward to celebrating the 10th anniversary of his miraculous transplant surgery.

Connor lives with his father Christopher and mother September. He also has an older brother, Hunter

(11), and a younger brother, Tanner (6). He also has two dogs Kimber and Mongo.

When Connor was only 4 months old it was noticed his growth was lagging behind. It was determined

he had a growth hormone deficiency. During that testing, an MRI also showed that he had a cavernous

hemangioma and when he was 15 months old he had his first brain surgery in order to remove it. Not

long after, a growth was found on his tongue and when he was 18 months old he was diagnosed with

Rhabdomyosarcoma and he started his chemotherapy treatments after the growth was removed. A

week after his second birthday he finished his last chemo treatment. Connor's last big surgery was

when he was 3.5 he had his 2nd brain surgery to remove the last of the cavernous hemangioma and

that was very successful. He is now 6 years cancer free and doing well on his growth hormone

medication.

Connor loves everything outdoors. He will be a Wolf in Cub Scouts this year. Once the lakes thaw he is

ready to go out on the boat and go fishing. When the snow starts flying he is ready to go skiing and

playing in the snow.