Ben's story is one that has touched the heart of us here at Warrior Made, and we want to do everything we can to help the family and this courageous young man. We want to do our part and are donating a large portion of all our sales to this Warrior's GoFundMe. If you would like to donate directly, here is the direct link (https://helpinghandsawo.org/projects/benjamins-fight-for-neuroblastoma).
See Ben's story below as seen on his family's Go Fund Me :
Ben Ben the Superhero
Benjamin “Ben Ben” Graham is an amazing 3 year old superhero who has been fighting harder than his hero Batman for most of his life.
Like any kid Ben’s age, he loves to play with his brothers (especially baby Dominic), watch endless hours of videos on YouTube, and watch and play anything and everything Disney (especially those pretty princesses, Cinderella and Elsa are his favorites). He’s a happy boy who loves his family. You’d think he was exactly like every other boy his age.
However, on October 15, 2015, after a visit with an urologist, his family was told the devastating news that 18 month old Ben had neuroblastoma, a pediatric cancer of the nervous system. To confirm his diagnosis, Ben was sent to St. Christopher’s Hospital in Philadelphia to test a mass on his right side. While having to stay in the hospital as inpatient, Ben bravely endured surgery and many tests to confirm that he was indeed Neuroblastoma Stage 1 Low Risk. The doctors also discovered that Ben had the MYNC gene. After the confirmation of Ben’s diagnosis, little Ben Ben bravely headed into surgery to remove the tumor. A golf ball sized cancerous mass, which was located on his adrenal gland, was successfully removed with a clean cut. At that time, the doctors were satisfied with Ben’s progress and recommended he go home without further therapy.
To check on Ben’s progress, Ben and his family headed back to St. Christopher’s Hospital in January of 2016 for his first set of post-op scans. These scans included MRIs, MIBG scans, and Bone Marrow scans. In order for these scans to be successful, Ben must bravely fight through needles, hunger, and boredom. During this first set of scans, the doctors found a small spot. They hoped it was only scar tissue. Another round of scans were ordered. Again, Ben had to fast and be harassed by his nurses (as lovely and awesome as they are, no three year old likes needles). Then, in February 2016 Ben’s family got the news that Ben’s tumor had returned. This time, the tumor had grown and was wrapped around both of his kidneys and a major artery. His parents couldn’t believe it. Within one single month, his tumor went from a questionable spot to Stage 4 High Risk Neuroblastoma.
Ben was in for a major fight. Treatment was necessary. After two rounds of chemotherapy at St. Christopher’s, Ben’s family headed to CHOP (Children’s Hospital of Philadelphia) for a second opinion. They decided to transfer Ben to CHOP, where Ben began three more grueling rounds of chemo. Although the chemotherapy made Ben extremely sick and bed-ridden, he remained his happy self and kept smiling his beautiful smile. During all of this, Ben’s parents couldn’t work. They had to stay home to be with and care for Ben. The bills began to stack up. They needed gas to get to Ben’s appointments. Plus, they had three other beautiful boys to care for. The financial stresses began to pile on top of the stresses of Ben’s disease and treatments. However, the family continued to carry on.
After Ben’s five rounds of chemotherapy he went for yet another set of scans. The tumor had shrunk to 3cm. Although this was good news, the remaining tumor was still wrapped around his artery. Ben headed into another surgery where 97% of his tumor was successfully removed. To make sure the remaining 3% was taken care of, Ben had yet another round of chemotherapy. In August of 2016, after going through more than any family should ever have to go through, the doctor’s announced that Ben was NED, No Evidence of Disease. Ben’s cancer was gone.
To keep Ben’s cancer at bay, his doctor’s recommended that Ben have a bone marrow transplant. The family was hesitant to put Ben through such a taxing ordeal. They went to New York for a second opinion, but because Mom was pregnant and needed to be closer to home, they headed back to CHOP for his transplant. The transplant was very difficult for Ben. He had to stay in the hospital for a month, he became very sick, and couldn’t get out of bed most of the time.
If the bone-marrow transplant wasn’t bad enough, Ben had to start immunotherapy just a couple of weeks after transplant. Immunotherapy is a new cancer treatment which makes the body’s own immune system fight the cancer cells invading the patient’s body. Ben had to have immunotherapy every few months. Ben was in such pain during the immunotherapy treatments that at just three years old, he had to be hooked up to a morphine pump.
After all of his treatments, a new set of scans were ordered for April of 2017. His doctors were very hopeful. They told Ben’s family to prepare to celebrate the end of his treatment.
Again, Ben fasted, was poked, and put under anesthesia. Scans were taken. His doctors found a small spot, but were sure it was a ball of phlegm since Ben was already showing signs of bronchitis. A second round of scans were ordered for the following day to double check. This time they did the scans while Ben was on his belly. The scans showed nothing. He was sent home with orders for two more rounds of immunotherapy.
In June of 2017 Ben’s family prepared a huge end of treatment party. Face painters, firemen, Disney princesses, and all of Ben’s friends and family were ready to celebrate. Ben went through a round of routine scans. Then, on the Friday before his big party, Ben’s parents got an unwelcomed phone call from his doctors. To their disbelief, three new spots were found on Ben’s newest scans: one on his upper left clavicle, one on his left adrenal gland, and one in the lower pocket of his left lung (the spot they had been sure was just a ball of phlegm). Ben had relapsed.
Unfortunately, there is no cure for relapsed neuroblastoma. But, Ben and his family aren’t quitters. They are currently awaiting a new clinical trial. Ben will be one of three children to receive an experimental treatment in pill form, which has shown success in adult lung cancer patients. He will start this trial around Labor Day.
Ben is the glue that keeps his family together. Although it’s been difficult on his parents emotionally and financially and hard on his brothers who crave their parent’s attention too, in many ways Ben’s illness has made his family stronger and closer.
For now, Ben and his family continue to fight. Even though the bills continue to add up, the family is doing their best. Ben’s dad tries to make ends meet by selling things like his new line of DIY super hero cars which he makes himself. In addition to paying off the piles of bills, the family hopes to find a way for Ben to do all of the things he wants to do, like go to Disney World, fly in a hot air balloon, kiss Princess Sofia, and ride a horse. A kid who has endured such a long and difficult battle deserves to have all of his dreams come true. Please keep Ben and his family in your thoughts and prayers as Ben continues his fight.
Benjamin's condition has recently worsened, and we were made aware by an organization known as "No One Fights Alone" (Their Facebook) here is the news they shared:
A few hours ago family has come public about the updates of Honorary Firefighter Benjamin. Family had a meeting with Doctors yesterday and the outcome has worsen. Chemo is not working, and the tumor has spread throughout his body. Signs of this cancer is now visible to the eye. At this point, Honorary Firefighter Benjamin’s health is declining, and no other treatment is available. Doctors advice family that Honorary Firefighter Benjamin will be on our earth for three weeks if not less, and a DNR is being signed today. Honorary Firefighter Benjamin is a proud member of the Mizpah Fire Company (NJ), Elmer Fire Department (NJ), and is also a Honorary Trooper with the New Jersey State Police. Family is discussing about doing a early birthday for him, due to his birthday being on April 17th.
Please keep Honorary Firefighter Benjamin and his family in your thoughts and prayers during this hard time.
***Brothers & Sisters First Responders, Please Note How You Can Help Answer And Respond To This “Mayday”***
NoOneFightsAlone wants to put together a video to support this little Hero of ours. We are asking emergency agencies to please take a moment and help us back a brother in a time of need. We are asking for a picture of Firefighters and Police Officers holding a sign reading * Benjamin Strong * in front of your emergency apparatus or patrol car, and message NoOneFightsAlone with the picture. We are going to post the pictures of support Saturday March 31st, at noon time, that gives us a week to couldn’t collaborate. Our fans and supporters, please share and tag responders near and far to help bring awareness of this situation please. With all of us working together, we can show Honorary Firefighter Benjamin, that.......
We are standing with you brother, in this family, no one fights alone, keep fighting, WMOK.
Update on Benjamin:
Benjamin Michael Graham Age 3 of Elmer, NJ passed peacefully from the arms of his parents into Heaven, Friday, March 30, 2018 at 4:10 am. Ben-Ben as he was called, was the middle of 5 boys born to Wayne Graham and Amanda (Picchi) Graham April 17, 2014.Ben fought a very brave battle against a rare form of Neuroblastoma, a Pediatric Cancer, that he was diagnosed with at 18 mo. of age. Sadly, Ben had the worst possible case due to very rare mutations. Those mutations made his cancer difficult to treat. Ben was a fighter from the start. In utero he was diagnosed with Hydronephrosis. At his 18 Month ultrasound they discovered a tumor on his right adrenal gland. Days later after its discovery Ben underwent his first surgery in October 2015. In January of 2016 scans were repeated and at that time they discovered a tumor completely surrounding his stomach. He was then diagnosed with Stage IV Neuroblastoma. Ben would go on to have yet another surgery and countless rounds of Chemo, radiation and a stem cell transplant. He went into remission and relapsed in June of 2017. From that point on it was a fight to find treatment that would put him into remission. Trips to various hospitals for consultations and numerous different chemo drugs, radiation and immunotherapy drugs all failed. Ben underwent more chemo at the end of December 2017. His condition deteriorated from that point on. He spent 46 days in the hospital only to return inpatient within 5 days after he was home. His pain was not able to be controlled at home. He was readmitted to the hospital and underwent additional treatment all the while continuing to have heightened pain. It was then discovered on March 23, 2018 that his cancer had returned and had invaded all of his organs and was out of control. There were no options for any further treatment for him. It was a huge struggle to get pain medication adjusted for him and after his body could not fight any longer he peacefully entered the gates of Heaven on March 30, 2018.Throughout the course of Ben’s illness he was sworn in as an Honorary New Jersey State Trooper, Camden County Police Officer, Philadelphia Police Officer, Atlantic County Sheriff, Elmer Fire Fighter, Mizpah Fire Fighter and Malaga Firefighter. He is survived by his loving parents, 4 brothers, Wayne Jr., Jaxson, Joseph and Dominic. Paternal Grandparents Harry and Elizabeth Graham, Maternal Grandparents Joseph Picchi and Melinda Picchi and numerous Aunts, Uncles, and extended family and friends. Services for Ben will be Thursday, April 5, 2018 at the Elmer Grange Hall, 535 Daretown Rd., Elmer, NJ 08318. Public viewing from 1-4 pm and services will start at 4 pm. Immediately after the service Ben will be led by the New Jersey State Police, Elmer Fire Department and various other Police and Fire departments in a procession honoring him. After the procession the family will return to Elmer Grange to host a gathering honoring Ben’s beautiful life. In lieu of flowers the family has requested that donations be made to: All In To Win Foundation, 4801 Gulf Blvd. #197, St. Pete Beach, FL 33706 Donations can be made online at http://allintowinfoundation.org In the memo section please reference “Ben-Ben”. Donations will be used for research for Neuroblastoma and assisting families of other Neuroblastoma children with financial help.