In Clarence this January, a tousle-haired 4-year-old boy who likes to hunt frogs, build forts and play with sticks started telling his mom and dad that his head hurt.
The headaches became more painful and more frequent and sometimes made him throw up.
A pediatrician diagnosed the trouble as a sinus infection and prescribed an antibiotic. When that didn’t work, emergency room doctors diagnosed constipation and prescribed a different antibiotic.
And when that didn’t work, the doctors ordered an MRI and then opened up the boy. They found a brain tumor the size of a pear.
All this can be found in a blog about young Ben Sauer written by his mother, Mindy, and viewed by perhaps hundreds of thousands of people nationwide who offer prayers, advice and encouragement.
Mindy Sauer’s posts are both heart-wrenching and uplifting as she writes about a family blindsided by the grave prognosis for their sweet child.
Ben doesn’t have months. It’s probably a matter of weeks.
“His parents are trying to make him as comfortable as possible,” said Marissa Albrecht, Mindy’s sister. “The doctors don’t have much else they could do.”
More than 20,000 people follow Ben’s story on Facebook. Mindy Sauer’s blog – “Pray for Ben Sauer” at bensauer.blogspot.com – collected more than 230,000 hits by Saturday. Meanwhile, people locally who have learned of Ben’s story are rallying around the family.
A large turnout is expected today for a fundraiser spearheaded by Ben’s uncle, Peter Sauer, from 4 to 8 p.m. in the Chapel at CrossPoint at 500 CrossPoint Parkway in Getzville. Some proceeds will also go to Roswell Park Cancer Institute to support research into childhood cancer.
The Peace Bridge was bathed in blue light Saturday night. So were Buffalo’s Electric Tower and the Central Terminal. Blue lights shined on front porches in the Sauers’ Clarence neighborhood.
That was for Ben Sauer.
His parents always dress Ben in blue so everyone can distinguish him from his identical twin, Jack. So blue became the color of support for a boy who, as the Sauers say, is “waiting on a miracle.” Today’s benefit is dubbed “Blue4Ben.”
On her blog, Mindy Sauer’s robust faith in God comes through. Her readers comment in kind:
“We are on our knees praying for a miracle for Ben. I see God’s grace thru you. God bless you and your family!”
“I prayed for Ben and your entire family at Mass this morning, Mindy. I hope the sun is shining where you are today and that you’re enjoying lots of family time ... one day at a time! xo.’’
“I’ve just spent some time reading every word on your blog. My heart hurts for you and your family. Your faith is so deep in such a painful time ... Even now as I type I am overwhelmed with tears...
“I can’t stop thinking about you, your family and of course most of all your sweet Ben. You are in my prayers. God bless you all. Love and hugs from Germany.’’
An ideal life
Just two months ago, life at the Sauer home was ideal. Ben and Jack, both with dimpled smiles, were rambunctious, playful, curious. They were born on the second wedding anniversary of Mindy and Andy Sauer in May 2009. Sister Megan arrived happy and healthy in April 2012. “God has been very good to us,” wrote Mindy, a schoolteacher who became a stay-at-home mom.
Ben’s headaches began in the middle of January. When he was wheeled into an operating room, the neurosurgeons at Women & Children’s Hospital removed what they could of the tumor but didn’t go farther out of fear they might damage healthy cells and hamper his brain function.
His mother, who stroked her children’s heads at night, wrote about what it was like to soothe young Ben after the operation.
“I can feel the dissolvable sutures. The places where his skull was sewn back together. His hair has been coarse and I can still smell the orange cream they spread over the area to protect it from infection ...
“But still I stroke his hair as I sing. Lightly. Because it brings all of us comfort.”
Tests on the excised shards of tumor revealed that Ben had an aggressive cancerous malignancy, Stage IV Glioblastoma, rare in the general population and more rare in children. The operation was followed by six weeks of radiation and chemotherapy at Roswell Park starting the week of Feb. 25.
“I had felt nervous about what I would tell Ben, about what to expect. But I decided to take the ‘less is more’ path,” she said on her blog. “I answered questions as he asked them. I was curious to see what he had thought about all of this, so the half-hour drive to the facility yesterday was valuable discussion time.
“I told him that they took the bump out of his head, but that there were small pieces left behind. That’s why we needed to go to Roswell, to let them give him medicine to help get rid of the extra pieces to be sure his headaches don’t come back. The medicine would come through a machine and it would circle around his head, but it would not hurt. And that he would be asleep. He was okay with that.”
Then, just a week into it, Ben experienced more headaches.
An aggressive tumor
A new MRI was performed. Mindy Sauer wrote about the findings on Monday:
“The tumor has grown. Tripled, actually.
“In just three weeks since his brain surgery, Ben’s tumor has grown three times its original size. The neurosurgeon is just as shocked as we are. He has treated a few Stage IV Glioblastomas in his experience, even in young kids like Ben. Some older, some younger. And never has he encountered such an aggressively growing tumor. Never ...
“The good news,” she continued, “is that they put off the idea of another brain surgery. AND they sent him home. My poor baby was so excited to be freed from all the twisty wires that have entangled him, the beeping alarms, the hourly neuro-checks, and get the green light to sleep in his own bed!”
But the good news was also the bad news. There would be no additional brain surgery because there is little chance that it can save Ben.
On Thursday, the boys were to start the process that would place them in kindergarten in the fall. Even with the prognosis, Mindy intended to bring Ben to the grade school as well as Jack. But Ben was too tired. So Jack and Mindy went hand in hand to the Clarence Center Elementary School.
“It felt so emotional,” she wrote, “walking into my alma mater holding only one boy’s hand. When I had always thought about this experience holding two. I just wasn’t ready for it. I felt so sick I wanted to throw up.”
Ben is often tired, in part because he must be awakened at night to receive the steroids that manage the pain. Whether he appears at today’s fundraiser depends on how he feels at the time, said Albrecht, his Aunt Marissa.
“We are incredibly grateful that he still has his capabilities,’’ she said. “He is certainly tired a lot of the time, but he is still the same kid. ... He hasn’t shown any noticeable decline in speech or fine-motor capabilities. In fact, the doctors were amazed that he is as high functioning as he is, considering both the size of the tumor and the rapid growth.”
Mindy Sauer has been struck by how much Ben takes after her. She likes to get to the truth right away. So does Ben. She recalled this in a blog post:
“Ben had a reputation at Children’s of being a really smart kid. They’d say, ‘Okay, buddy, I’m just gonna take my little hugger and squeeze your arm a little bit.’ Ben would look at them with a doubtful stare and say, ‘Do you mean you’re going to take my blood pressure? To see how my blood is flowing?’
“They’d look at him in shock as if he had just cracked their locker combination.”
She and her husband are taking one day at a time.
“We are determined to soak up individual moments, savor them, and tuck them into our memories as special and precious. Because none of us – none of us – are promised tomorrow.”
Ben always gravitated toward her, and Jack toward his father. When the family would go someplace, Dad would hustle in with the boys while Mom dealt with Megan. But almost always, Ben would double back to wait for his mother.
‘Flood of emotions’
On Thursday, after bath time, the family was to gather around the television set for a movie night. Mindy Sauer wrote about it in a post called “Flood of Emotions.”
“Andy took the boys downstairs for Movie Night – a once-a-week treat that has since become a nightly ritual – and I stayed upstairs to pick up the wet towels.
“I heard Andy calling for Ben to join them, but then I heard my little one say, ‘I’ll be there in a minute. I just have to wait for Mom.’
“I looked up from the floor and saw Ben, walking toward me from the top of the stairs. I almost lost it,” she wrote.
“Ben always waits for me.
“Oh, how I would miss my Benjamin!” she continued.
“God could perform a miracle. He is able.
“Oh, how I wish He would.”