Benjamin’s Fight for Neuroblastoma

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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.

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