WATERTOWN — While their daughter had been struggling since August, complaining of back and abdominal pain and general discomfort, Kimberly R. Schuldt and Jefferson County Sheriff’s Deputy Jamie M. Taylor never thought she might have cancer.
They thought she was first getting her menstrual cycle, so the symptoms were initially written off.
When it became clear that the pain was not going away, Callie had Jeanne Taylor, 12, blood work and ultrasounds of her kidney area, but nothing came out. Her parents were in constant pain and couldn’t do much for her other than giving her over-the-counter pain relievers like Tylenol.
Callie started taking a lot of baths because they helped relieve the pressure and made her feel better. Sheriff deputy Taylor recalled coming home to Callie for a few days upside down on the couch with her legs in the air, because that’s how she felt most comfortable.
“After a while I think she just kind of learned to live with the pain and we didn’t really think about it,” he said.
Fast forward to October and Callie was unable to overlook what was going on. She was in class at South Jefferson Central School on Monday, October 4, when she became nauseous and went to the nurse’s room. She was sent home and had to test negative for COVID-19 because of the pandemic before she could go back to school.
Her mother took her to her GP’s office where they weighed her and noticed that she had lost about 10 pounds since the last time she was there, which was not too long ago.
The doctor started to feel round and pressed Callie’s stomach. The doctor could feel the tumor that had grown inside her. She was immediately sent for another ultrasound that confirmed the presence of the tumor. She went straight to Upstate Golisano Children’s Hospital in Syracuse the same night.
“That’s the last thing on your mind when your child isn’t feeling well,” said Mrs. Schuldt. “She never wanted to go to school and I think she was just trying to get away. She’s the only one who knows her body and how she really feels, so I was proud of her for listening and going to the nurse. For this reason, I was actually thankful for COVID, otherwise I wouldn’t have taken her to the doctor that day and they wouldn’t have found the tumor.”
As Deputy Sheriff Taylor describes it, the first week they were in Golisano was actually a “week of hell”.
Callie got there and tested positive for COVID that night, so she was placed in complete isolation. Because her parents were with her, they too were placed in isolation and not allowed to leave the room for 10 days. If they had, they wouldn’t be allowed in again.
The tumor was then biopsied to find it was cancerous, so a port was placed in Callie’s chest to begin chemotherapy. After that, Callie had some complications, especially when it came to pain. She was essentially on morphine around the clock. The tumor had grown since she arrived in Golisano and began to press on her bladder and urethra, blocking kidney function.
To counteract this, doctors started pumping Callie full of fluid to get her ready for chemo, but the next day she woke up and couldn’t move her legs. When she lifted her dress, they saw that she had gained 30 pounds in just her legs, because the fluids couldn’t pass through the kidneys and drained into her body.
The fluid regimen was stopped immediately, and Callie’s doctors placed a nephrostomy tube — a catheter — into her kidneys to help them drain properly.
“Once I had that, it helped a lot,” she said.
Although they previously knew the tumor was malignant, Callie was officially diagnosed with Ewing’s sarcoma, a rare bone cancer, on Friday, October 8.
“It was scary — hearing the C word was a big deal,” Deputy Taylor said, to which Ms. Schuldt replied that it was an out-of-body experience.
According to the St. Jude Children’s Research Hospital, Ewing sarcoma is a cancerous tumor that grows in the bones or in the soft tissue around bones. Although Ewing’s sarcoma is the second most common type of bone cancer in children, it is still very rare. In the United States, only about 200 children and young adults are found to have Ewing sarcoma each year.
After the catheter was placed, Callie was taken off the morphine. About six weeks later, she had the tubes removed because she no longer needed them.
Her chemo schedule is now a five day round and then a week off. She has a two day round and a week off, then goes back to the five day round in a continuous rotation.
“With the chemo, my stomach doesn’t really hurt, but it just kind of goes away and I lose a little bit of my appetite sometimes,” Callie said. “At the five-day treatment, it’s a lot, so I feel kind of crap all the time. The chemo kills all the fast-moving cells, whatever kills her, that’s why I lost my hair — all the nurses are so impressed that I remembered.
While the first week on Golisano felt like blow after blow, Callie took a positive turn and according to Deputy Taylor, the chemo treatment was really good for her. Callie’s tumor, when checked a few weeks ago, was over 80% smaller than when it all started. On Monday she will have another round of chemotherapy and scans will be scheduled to measure progress. Next steps include radiation.
Though she was diagnosed with cancer just a few months ago, the seventh grader hasn’t let the diagnosis take over her; maintain her positivity and strength.
“My first reaction was that I was sad and scared because when I heard you had cancer, I thought, ‘Am I going to die?'” Callie said. “I knew that being upbeat wasn’t the only thing, but probably one of the biggest things that will get me through it.”
She has arranged everything so well that it is sometimes difficult for her parents to remember that she has cancer. Aside from low energy due to treatments, she still has her spark and is a typical kid.
Callie likes cheerleading, going out and watching TV, and swimming, except when she has to do it for gym class. The South Jefferson swim team held a Swim-A-Thon to raise money for Callie and her family to cover additional expenses, which she said was pretty cool.
The Swim-A-Thon was not an isolated example of the community rallying behind Callie during her journey with cancer. Ms. Schuldt said there was a Christmas Makers Market at the Lincoln Loft in Public Square last weekend, and money from photos with Santa also went to Callie. In early January, there will be a fundraiser for spaghetti dinners in Henderson in Callie’s honor.
The second Battle of the Badges will be held on January 29 at the Jefferson Community College gymnasium. This year, Watertown Area Boxing Club is helping raise money through the event to support Callie and Northern New York K-9s.
“Overall, we’ve had a lot of community help and support,” said Rep. Taylor. “We’ve had countless opportunities and people have just reached out to us to help us, to help Callie. They have provided her with games and toys, an iPad and Nintendo Switch, as she has been in bed for so long because she had something to do.”
Callie was recently cleared to go back to school, and last Monday she tried to go back. She made a few hours of it, because a full day of school is still a lot for her right now. She said she has a hard time worrying about what people think.
For example, Callie said she thinks others might judge her for having to go to the nurse’s office, they’ll think she doesn’t want to do a job and instead see the nurse “because she can.”
“It’s something I need to work on, I guess,” she said. “I will do my best.”
Callie and her parents missed quite a bit of school and didn’t want to be left behind. They discussed the academic options. Callie has said she would like to have a tutor to help her.
Now the family only looks to the future, knowing that the road ahead will not be easy, yet maintain a positive attitude.
During a recent conversation with Callie, Deputy Taylor said that while no child ever deserves such a thing, he said it was especially true for his daughter that she has done nothing in her life to deserve it.
“People, they say everything happens for a reason,” sheriff Taylor said. “And for whatever reason this is, I still don’t know.”
“But for whatever reason, why are you the kid who has this?” he asked his daughter, to which she replied:
“Because I’m the one who can handle it.”
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