Ben's Story

Ben was born on May 10th 1999 weighing 8lbs, 10oz.  On Ben’s 1st birthday he was just starting to take his first steps.  By 13 months old, Ben started crying frequently and spent a great deal of time crawling and rarely attempted to stand.  By 14 months, Ben was barely able to sit up without falling over.  I took him to the pediatrician several times, but was given antibiotics for ear infections or told that he had a viral infection.  At a routine 15 month well baby check, a new pediatrician was concerned because Ben’s head had grown significantly in only 3 months. 

The pediatrician scheduled a CT scan for the following week.  A few hours after leaving the well baby check Ben starting acting strange so his pediatrician recommended taking him to the ER.  After convincing the ER to order a CT scan, we were immediately pulled in to radiology to look at an orange sized tumor at the base of Ben’s head.  Ben was diagnosed with a severe case of hydrocephalus that was caused by his tumor blocking the flow of cerebral spinal fluid.  Ben was transferred to a different hospital where neurosurgeons were waiting to discuss a plan of action.  Ben underwent his first brain surgery in August 2000.  After 11 grueling hours the surgeon felt he removed the entire tumor.  A few days after the surgery we were given the news that Ben had a “benign” juvenile pilocytic astrocytoma…the “best” tumor to deal with.  Ben spent several weeks in therapy learning to sit, crawl, stand, and walk.  Things were looking great.  By January, Ben’s only problem seemed to be a lazy eye (strabismus caused by amblyopia).  We had an ophthalmologist correct the alignment problem and just continued to meet with Ben’s neurosurgeon for routine follow-ups.  After my husband left the active duty military for a job with NW Airlines, we moved to Minnesota. 

Ben started vomiting at bizarre intervals several times a week so we were back to the operating room at age two, this time with a new neurosurgeon.  The second surgery was much easier because the tumor was very small, but unfortunately originating from the brain stem.  Since the brain stem controls many of the vital functions of the body, the surgeon was unable to get the entire tumor.  A couple days after the surgery Ben was back for a third surgery to place a VPC shunt to help regulate his cerebral spinal fluid.  We brought Ben home from the hospital on September 10th, 2001.  September 11th brought devastation to our Nation, a furlough for my husband (a pilot), a job for me with Pfizer and a move to Florida.  While continuing to follow up with neurosurgeons to check for tumor growth, Ben was dealing with amblyopia.  Ben spent a year patching his good eye to strengthen his weak eye but that is a battle he continues to wage.  Ben’s third neurosurgeon recommended chemotherapy to help suppress tumor growth and possibly eliminate the tumor all together.  Chemotherapy doesn’t target slow growing cells, but it is one of the few treatments following brain surgery that is used in young children that aren’t old enough for radiation. 

A year of chemotherapy actually helped Ben start growing on a normal growth curve, unfortunately he didn’t grow for over 2 and a half years prior so he is still well behind his peers.  Ben had his first seizure in 2005 which opened a new chapter in his life.  The visit to the neurologist for the seizure led us to inquire about Ben’s ticks and severe outbursts.  A psychiatrist diagnosed Ben with High- Functioning Austism just before our move to Texas in 2006.  Ben had another seizure in September 2006 and started anti-seizure medication full time.  Over the years Ben has had to deal with physical, emotional, psychological and medical challenges.  Our hope as a family is for Ben and other children with slow growing tumors to have the best treatment options possible.  Ben wasn’t given a great deal of treatment choices.  Surgery continues to be the first, and for some, the only option.  Different neurosurgeons will refer to oncologists for chemotherapy or radiation oncologists for radiation treatment but there doesn’t seem to be a great deal of consensus on what is the best for JPA children.  Hopefully there will be some breakthroughs to help cure our children. 

We want to thank Matt Nelson (my former District Manager) and Brad Howe (my former teammate) for all the help and inspiration they’ve given us. Their charitable work and love for a boy named Ben is truly a blessing.