Super Brantley


Brantley was born a SUPERHERO and has had his super powers since birth. You see, he was born too soon at only 26 weeks, and he only weighed 1 pound, 11 ounces. He was tiny, but he was STRONG! He stayed in the NICU for 80 days and endured struggles of brain bleeds, jaundice, PICC lines and a host of so many other problems. But each day he got stronger and stronger and finally was able to come home. They said he might lose his hearing and could have severe eye sight issues and that he would be developmentally delayed for years. Super Brantley proved them all wrong and he thrived! He played harder than any kid on the planet; he started preschool at 3-years-old and loved it. His eye exams revealed that his eyes were perfect and his hearing was spot on! He was a TinySuperhero, getting stronger every day!

 

Then on December 12, 2016 at 4-years-old, after 3 trips to the ER for severe stomach pains, we received the news that Super Brantley had what appeared to be a tumor, and they were certain that is was CANCER. We knew that this little superhero was in for the battle of his life, again. That’s when our faith was shaken to the core, and we knew we had to LET GO AND LET GOD.

Super Brantley was diagnosed with Stage 3 High Risk Neuroblastoma Cancer at 4-years-old, and on that day he was rushed by ambulance from Columbus, Georgia to Children’s of Alabama in Birmingham, 3 hours away from home where testing and treatment began immediately. There was no time to preparem, and even if we had time, we didn’t know HOW to prepare for this life-changing event.

Mommy rode in the ambulance with Super Brantley while Simi stayed behind with Brantley’s 2 year old sister to make arrangements for her to stay at home, so Simi could make the 3 hour drive to Children’s Hospital to be with Mommy and Brantley. The days to come would be filled with scary moments and heart-wrenching decisions. There were treatment plans, Oncology Team meetings, scans, tests, a surgery to place a port in his tiny little chest, and tubes in his nose so he could eat. We tried to make sense of everything and tried to plan how we were going to move forward… how we were going to help Super Brantley understand what was happening to him.

The long, agonizing stays in the hospital were brutal and they took a toll on the entire family.

Mommy left her job in Columbus, GA, so she could be in Birmingham with Super Brantley. Simi continued to travel back and forth every week with little sister. After countless ambulance rides back to Birmingham for NG tubes that came out and fevers, we moved the family into a temporary apartment in Birmingham because of the long hospital stays and daily clinic visits in between treatments. That way, we could keep our family together and stay close to the hospital. We stayed there for 1 year.

Super Brantley went through surgery to resect the tumor, surgery to place a port in his chest, intense chemo, 4 weeks of daily radiation, another surgery to place a second broviac port in his chest, immunotherapy, 2 stem cell transplants, over 100 blood transfusions and platelet transfusions, NG tubes, surgery to place a feeding G tube, high fevers, nausea, intense pain, kidney issues, lung issues, stomach issues, infections, another surgery to remove the broviac port, antibiotics, biopsies that caused a major hematoma in his stomach causing him to stay an additional 3 weeks in hospital, thousands of needle sticks and IV’s, surgery to remove the main port due to a line infection and then place another port on the other side of his chest, and months and months of hospital stays- some as long as 7 weeks! Then, finally, Super Brantley had the last surgery to have the port removed completely.

We stayed on this journey for 18 long months, and on June 1, 2019, Super Brantley was declared NED – NO EVIDENCE OF DISEASE – CANCER FREE!

He is now in a 2 year trial study for a new drug called DFMO given two times per day at home that prevents the Neuroblastoma from returning. On June 1, 2019, he will be 1 year cancer free! We still travel to the hospital every 3 months for scans and blood work and will continue to do this for the next 5 years. Every trip we anxiously await the news from the scans praying that he is still cancer free.

He did lose some of his hearing due to the intense high dose chemo, but with his super power hearing aids, he hears very well. He will graduate from Kindergarten this month, May 20, 1029 and is getting stronger every day.

Super Brantley has battled for his life since the day he was born. Some days are harder than others but most days are SUPER DAYS! When you’re a TinySuperhero, you can do ANYTHING and every day is a gift!

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