WAKARUSA – After the upheaval of discovering her son has leukemia, Tonya Blanchard says life is finally returning to normal.
“It’s just a different normal,” she said.
Simon, a kindergartner at Wakarusa Elementary, was diagnosed the day before Thanksgiving with acute lymphoblastic leukemia.
Since his diagnosis, the community has rallied around him to support the Blanchards.
A sucker sale and raffle at the elementary school raised $2,700. A bake sale held Jan. 18 during a NorthWood High School basketball game raised $3,200.
“I nearly fell out of my chair,” Tonya Blanchard said when she discovered how much the bake sale raised. “I cannot believe the things this community does for us.”
Interra Credit Union created the Simon Blanchard Benefit Fund to help pay for Simon’s medical expenses and his mother is always surprised when she looks at the amount in the account.
“I’ll log on to get money to pay a bill and say, ‘Woah! Where’d that come from?’” Blanchard said.
When they returned home from the hospital after Simon’s diagnosis, the Blanchards found that their babysitter’s family had cleaned the entire house and an anonymous donor had filled the cupboards with groceries.
“We still don’t know who did that,” Tonya Blanchard said. “And people bring us meals once or twice a week. That had been a phenomenal help because my work hours are crazy now.”
Simon is an energetic 6-year-old. His favorite color is black and he is obsessed with dinosaurs. He laughs often and is constantly smiling. He’s eager to answer questions and bounces quickly from topic to topic.
His mother noticed something was wrong shortly before Thanksgiving last year when Simon lost some of his ever-present energy.
“He has always been a very hyper kid,” Tonya Blanchard said. “So it was very odd when all he wanted to do was sleep.”
“Very odd,” Simon parroted back, swiping his finger quickly across the screen of his iPad, a Christmas gift from a classmate’s family. “Very, very odd.”
“He started to get tired all the time,” she said. “He’s never been a big sleeper.”
At first she attributed the change to a change in Simon’s routine. Now in full-day kindergarten, he must be worn out from his long school day, she thought.
Then she noticed he was looking pale. Simon’s grandmother suggested they have his iron checked because low iron has been a problem in their family.
Tonya made an appointment for Simon to see a doctor on Tuesday, Nov. 20, but on Friday, Nov. 16 got a call from Simon’s school.
“He had fallen asleep in class and just slept and slept,” she said.
She took Simon to a clinic, where doctors told them his iron levels were low. They gave him iron pills and told them to come back in two weeks.
Still worried, Tonya decided to keep Simon’s Tuesday appointment with his regular doctor. Despite having taken iron pills for several days, his iron level had dropped lower.
“Our doctor took one look at him and she decided immediately to do blood work to find out what was going on,” she said.
The next day, the results came back.
“We knew it could be nothing, anything from his diet to a number of diseases we had found,” Tonya said. “All parents fear the worst. I think we just kind of knew.”
Simon’s doctor confirmed their fears.
“It was a relief to know,” Tonya said. “That was the second time I’ve ever seen my husband cry.”
After calling her husband with the news, Tonya and Simon headed to South Bend Memorial and then on to James Whitcomb Riley Hospital for Children to begin his treatment immediately.
They spent about a week in the hospital, including Thanksgiving.
“The sweet potatoes, the candy potatoes were not like grandma’s,” Simon said. “They tasted like they had carrots in them.”
These are the things Simon remembers from his hospital visits. He doesn’t talk about the treatments and surgeries unless he is asked. He raves about the jukebox in the playroom at Riley and the new pair of socks, his favorites, he got in the hospital.
Tonya Blanchard said acute lymphoblastic leukemia has a cure rate around 90 percent.
“That’s about as good as you can ask for,” she said.
After one month of weekly chemotherapy treatments, Simon had a remission test.
Remission, Tonya Blanchard explains, doesn’t mean Simon is cured, just that there are no detectable leukemia cells in his blood.
The test showed Simon wasn’t in remission and his status was upgraded from “standard risk” to “high risk.” His chemotherapy treatments, which would have continued weekly for another 6 weeks if he was in remission, will now continue weekly for 6 months.
“I was so sad we’d have to continue with weekly chemo but he said, ‘Well, I’m used to it,’” Tonya Blanchard said. “He’s my little trooper.”
Simon has accepted leukemia and his treatments as something he has to do and rarely complains, his mother said.
“There have been two or three times he’s said he didn’t want to do something, but then he always follows it with, ‘But I have to,’” she said.
While his chemotherapy treatments make him feel tired and his weakened immune system isn’t strong enough to handle a classroom full of kindergartners, Simon is keeping up with his schoolwork.
He receives several hours of one-on-one instruction each week at home and does other lessons, like math and handwriting, with his parents.
When he visits his classmates, he wears a mask to protect him from catching any kind of illness.
“No germs!” he exclaimed.
To make him feel more comfortable wearing a mask, his classmates decorated and wore their own face masks for his first visit to class.
“The children are just drawn to him,” said his teacher, Jan Snider. “He’s one of those little boys that is contagious. He loves to smile and is so happy all the time. Even when I went to visit him in the hospital he could not stop smiling.”
He has also been keeping up with the children at Granger Community Church. Because he couldn’t attend Sunday School classes, the church provided links to online lessons.
“He’s just covered in prayer,” Tonya said of the church’s support.
Simon’s younger sister, 4-year-old Rowan, helps keep the family grounded.
“She’s 4, so she wants what she wants and it doesn’t matter what’s going on,” Tonya Blanchard said. “If mommy’s having a sad day, she’ll still need mommy.”
The next scheduled fundraiser for the Blanchard family is a Nelson’s Chicken and Pit-tato sale started at 10 a.m. March 22 during the Wakarusa Missionary Church Children’s Resale.
Food will be sold at the intersection of Ind. 19 and C.R. 40. Advance tickets can be purchased at Richmond’s Feed Services, 704 East Waterford.