By Jeanne Sager
FREMONT CENTER — July 29, 2003 – There are some things that just aren’t supposed to happen.
You aren’t supposed to watch your 4-year-old go bald from chemotherapy.
You aren’t supposed to have to see him spend months at a time in a hospital bed crying out for his mommy.
But Callicoon Center resident Jennifer Ross just looks at the good things.
Her son, Jonathan Brautigam, was diagnosed with acute myloid leukemia in March at 4 years old.
It’s a disease that has a 60 percent survival rate, doctors say, compared to the 90 percent of people who recover from the other form of cancer Brautigam could have contracted.
Fortunately, he was diagnosed early, and he’s responding well to treatment.
And with the help of the community, including a fundraising softball tournament this weekend, the family will get through it all.
“Jonathan wasn’t even sick,” Ross recalled. “I didn’t even take him to the doctor.
“I took my infant to the doctor, and he looked at Jonathan and said he was a little pale,” she explained.
But Ross is fair-skinned herself, so she thought nothing of it. The family pediatrician, Dr. Gary Preiser of Roscoe, did a few blood tests and noticed Brautigam’s iron was low.
He gave Ross a prescription for iron pills and promised to call her the next day with the blood results.
“He called me that night,” Ross recalled.
The platelets in Jonathan’s blood were at 11,000. The usual minimum is in the 125,000 range.
“Thank God he didn’t bleed to death on me,” Ross said.
She immediately rushed her son to Albany Medical Center, and he was diagnosed with leukemia and started on a dose of treatments.
“They guessed he’d only had it for a few months,” Ross said.
The first bout of chemotherapy kept Jonathan in the hospital for seven straight weeks.
The treatment ripped up his small body, made him sicker than he’d ever been. He has to walk around connected to tubes that feed him medicine and sometimes food replacement when he’s too ill to eat.
“Chemo makes him feel like crap,” Ross explained. “The first time he was so sick he didn’t eat for a month.”
And a usually happy-go-lucky kid, Brautigam throws people out of the room when he’s going through chemotherapy and upset by his illness.
“He’s a pretty good kid, but he’s become a little bit snippy.
“The nurses spoil him rotten!” Ross added. “They get toy drives, and the first room they come running to is Jonathan’s.”
They’re all drawn to the little boy with a bright smile and a big heart who’s struggling to stay alive.
One doctor takes 20 minutes a day out of his rounds to play dinosaurs or watch cartoons, agreeing to Brautigam’s favorite, “Ed, Edd and Eddie” on the Nickelodeon network.
The little boy who loved to run his fingers through the bowl cut atop his head has lost his hair, struggling when Ross shaved his head so he wouldn’t have to watch the hairs fall out one by one.
“He was a hair player,” Ross said with a sigh. “He loved his hair.”
He was embarrassed to leave the house without a hat on – embarrassed to be seen in public as a bald kid.
A nurse with a big heart noticed Jonathan’s anxiety, took surgical hats available only to doctors and wrapped them in fabric imprinted with popular cartoon character Spongebob Squarepants. He sports one every day now so he can run and play like a normal kid.
Well, almost normal.
In order to give Brautigam medicine at home, he was implanted with two tubes that hang from his chest to keep a steady flow of treatments during the day.
That means no swimming this summer, not even a bath.
And it means older sister Casandra, 6, is always warning other kids to “be careful with my brother, he’s got tubies.”
“You try to maintain as normal a life as he can,” Ross said. “His platelets drop so quickly, he could literally bleed to death [if he’s hurt while playing with other kids].”
So far he’s been through two bouts of chemotherapy, and because of his diagnosis, it’s an extremely aggressive treatment.
Ross heard from doctors that one in five children with Brautigam’s kind of leukemia succumb to the treatment in the first month.
“Knock on wood, this time he really made it through and impressed the doctors,” Ross said.
This ordeal has stretched Ross as well.
Having to give up time at work, she spent the entire first seven weeks with Jonathan in Albany, staying as much as possible at the Ronald McDonald House to save money.
Brautigam’s father came up from New Jersey to help spend time with him, but Ross still has Casandra and 8-month-old Christian at home to care for.
“Someone has to be there for them,” she noted.
Even when Jonathan isn’t in the hospital, he has to make frequent trips to Albany – 250 miles roundtrip at least twice a week.
And he’s expected to return for another long stretch of chemotherapy (hopefully his last) tomorrow.
Ross’ dad, Michael Ross of North Carolina, a former Roscoe resident, came up north to be tested for a bone marrow transplant if Brautigam needs it, and he came up a match.
But there are other challenges in the way. And the Fremont Center’s softball tournament will be a big help.
It was a complete shock, Ross said.
“I was so amazed when the girl called me,” she explained. “I didn’t even know her, she just worked for the bank.”
“The girl” was Loreen Gebelein, an employee of the First National Bank of Jeffersonville who spends her free time working with Fremont Park Incorporated helping to make the field in the hamlet a place for the community.
The fundraising softball tournaments started four years ago, and each has benefited someone in the community in need.
When Gebelein heard of Jonathan’s plight, she knew they were the family to honor this year.
“I don’t think any child should deserve this,” she explained.
The tournament will be held Saturday and Sunday, August 2 and 3, from 9 a.m. on.
There will be benefit raffles and refreshments for sale, and seven teams will face off for the championship.
Those who can’t attend can still donate to the cause by sending a check – made out to Fremont Park and indicating the money is for Jonathan Brautigam – to Loreen Gebelein, 192 CR 94, Hankins, NY 12741.
Ross hopes this will be a blessing on Brautigam’s quest for a cure, and she hopes it will bring awareness to leukemia and help other families in the same boat.