Superhero Ben is a 5-year old boy that every day with a smile on his face, puts a smile on yours. He loves playing with his cousins, watching SpongeBob, asking everyone how old they are and giving the biggest hugs… always telling everyone that he loves them. He loves Boston sports, toy guns, fast cars, dinosaurs, police cars, and playing hide-and-go-seek. Unfortunately, life eventually throws us all curveballs and sometimes children don’t always get to continue the painless, fun childhood we all like to imagine. This story tells the ride Ben has traveled and will continue traveling as he fights for his life with one of the rarest cancers diagnosed in a child.
On May 28th 2014, Ben & his dad, Mike, went to an urgent care facility in NH. Earlier that week Ben had been complaining of painful headaches which led to him waking up in the morning and throwing-up. It was time to get checked out. The Doctor blamed the activity on a double ear infection. Mike, coming from a family that knows ear infections, pushed to have a diagnosis with better clarity. A CT scan determined a “large mass” inside Ben’s brain which immediately prompted an ambulance ride to Children’s Hospital in Boston. A MRI was issued at Children’s and confirmed the softball-sized mass that surrounded the left side of Ben’s brain. Surgery was scheduled and Children’s Hospital did what they do best.
The next morning a team of the *absolute best* staff and surgeons in the country (we are so lucky to be located close to Boston) were briefed and gathered to perform a grueling operation on Ben’s brain to remove this tumor from his head. To Ben, the doctor’s were “removing his headaches”. Amazingly, “the most advanced, groundbreaking operating room in the world with a built-in MRI” was freed up to perform this surgery. Updates were delivered every 90 minutes describing steady progress as the clock continued to slowly tick. Eleven hours later, a surgeon greeted the family to pronounce that they were able to extract the entire tumor and Ben is now being “put back together”. Incredible! Ben spent the next 4 days in the ICU as his head, face and body healed, later to be transferred to the 9th floor at Children’s. The next step in the process was a pathology report to diagnose what this tumor really was.
There were many rough spots, where the right side of Ben’s body wasn’t reacting normal, but a couple weeks passed and he ultimately regained all strength. Benjamin’s temperament improved dramatically and his spirits were better than ever. He even got to go back to school and see all his friends. This was an amazing experience to see how a child can go through so much and bounce right back. Now it was time to learn what this tumor really was. Dana Farber scheduled the next visit for Ben and unfortunately the news wasn’t as everyone had hoped. The doctor described the tumor in Ben’s brain as extremely rare. In medical terms it was diagnosed as a choroid plexus tumor which makes up 0.5% of all brain tumors in children, but more specifically the tumor is a choroid plexus carcinoma tumor which makes up 10-20% of all choroid plexus tumors. This malignant and rare cancer occurs in the ventricles of the brain with no known causes. Devastating.
The next step required a spinal tap to determine whether or not the tumor cells traveled through the cerebral fluid to other areas of Ben’s body. Not a fun process, but as always Ben was a champ. The diagnosis came back a week later and revealed that Ben’s cancer thankfully is focused in the brain area. Treatment options were now discussed in greater detail. Dana Farber prescribes to a specific treatment for these tumors they call “Regime A”. This includes 7 treatments of chemotherapy, spending a week at a time in the hospital receiving chemo and 3 weeks out of the hospital to regain strength. Treatment, recover, repeat. The side effects of chemotherapy vary for all children but include need for transfusions, hearing loss, and weakened immune system. The family also learned that the regimen called for radiation treatment after the second chemo treatment. The effects of radiation include learning disabilities, growth retardation and delayed speech. The goal of each treatment session is that after each treatment, there are no signs of tumor growth. An MRI is done every 2 sessions.
Mike & family are going through a process of receiving a second opinion on the diagnosis and treatment plan from a doctor out of Cleveland Clinic (OH); Dr. Wolff. He has dedicated his career to specializing in these pediatric tumors and it only makes sense to have his mind involved. This may soon require a visit to Cleveland, OH with the next steps TBD. There is also the process of explaining to Ben what is happening to him and why he is going through these horrible treatments.
This cancer Ben has is rare and the ride he travels is unique, but these roads have been traveled and finish lines have been crossed before. Ben is one of the strongest, bravest kids you’ll ever meet and he will find a way to beat this.
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