Diagnosed with embryonal rhabdomyosarcoma in July of 2013, Sarah Brooks underwent surgery to remove the tumor, followed by 45 weeks of chemotherapy.
TANEYTOWN — On the morning of Oct. 15, 3-year-old Sarah Brooks played like any other child in her day care class at the New Christian Learning Center. She bounced and tumbled with the other children on the carpet as they gathered in circle before lunch, focused closely on a coloring activity with her classmates at a table and tossed her head back a bit in a smile and a laugh when playing with her friends.
Two years ago, things were different for Sarah. Diagnosed with embryonal rhabdomyosarcoma in July 2013, Sarah underwent surgery to remove the tumor. That was followed by 45 weeks of chemotherapy. Her head, which today is full of curls, was bald from the weeks of chemo, and her days were spent at Johns Hopkins Children's Center rather than at day care.
"You try to leave it there where it was two years ago. Sometimes it will sneak up and bite you," said Joe Brooks, Sarah's father. "It could be something as simple as washing my hands in the bathroom here and the soap brings me right back to the hospital soap ... You're fine up until that point, and then you encounter something like that, something small that brings you right back to John Hopkins."
Through late night and early morning trips from Carroll County to the Baltimore hospital, unexpected stays when things weren't going well and tough realities of chemotherapy for a 15-month-old even when things were going well, Joe and Kenyatta, Sarah's mother, did their best to keep positive and provide a warm, loving environment for their daughter.
That was their focus throughout it all, Kenyatta said, as the ultimate outcome, for her at least, was never in doubt.
"I have a strong faith so I wasn't concerned about Sarah," Kenyatta said. "She was diagnosed so early, and looking at stats and just knowing who my daughter is — she's a child of God — that she was going to be fine."
Sarah had her last dose of chemo on June 2, 2014, and has been in remission since, although Kenyatta said recently she is not entirely out of the woods yet.
"They want her to be five years out from chemo before she is considered cancer free," Kenyatta said.
For now, Sarah gets quarterly check ups involving blood draws and CAT scans — but those check-ups are old hat after the chemo.
"You never thought you would get used to something like that, but we have. It's a part of our life," Kenyatta said. "Sarah gets scans, Sarah gets anesthesia every three to four months. Sarah is on medication right now, no big deal; she can swallow a pill no problem since she was 2."
Sarah has had some lingering health problems following her treatment, from frequent nose bleeds to some respiratory infections that kept her from returning to day care, to neuropathy in her feet that Kenyatta said has lead to loss of feeling there, making Sarah prone to bumping and scarring her knees.
"I'm just happy that she has those scars, as crazy as it sounds," Kenyatta said. "It's just a sign of healing because before she couldn't do that; she was weak and tired."
Today, Sarah is anything by weak and tired.
"Her hair is growing back really well and she's playing and she's sassy — you know, the ultimate sign of recovery," Joe said.
When they look back on their family's journey and think about what advice they might give others facing a similar diagnosis in a child, Joe and Kenyatta said that first and foremost, you cannot do it on your own.
"We put Christ first, because without him your mind can take you into areas that you shouldn't go," Joe said. "You need his strength, you know, to get through; especially situations like this. Nobody expects their child to get sick with cancer. Maybe the flu, but never a bombshell like that. You need to know how to fight this fight spiritually as well."
Joe believes it is also important to pay attention to the other members of the family. Sarah's brothers, J.B. and Jordan, who were 10 and 8 at the time Sarah was being treated, were also going through a hard time processing emotions, he said, and it's important that siblings get the support they need in order to keep the family strong for the child battling cancer.
"What I would want other parents to know is that if you have children that don't have cancer, that have a little brother or sister that does, it is very important that they get into a group with other siblings that have brothers or sisters that are going through the same thing with cancer," Joe said. "It gives them a chance to open up, to share their ideas and hurts and pains, all of that."
Also important, Joe said, is learning how to let go of that sense of responsibility for providing everything that parents sometimes feel and opening up to offers assistance.
"If people want to help, allow them to help," he said. "I think that was a huge thing for us."
One source of help and support was Sarah's day care, which she had only been attending for a couple of months before her diagnosis forced Joe and Kenyatta to pull her out for treatment.
"The children here and the teachers here were really great. They wrote us a lot of letters," Joe said. "It was really touching, you know, that outreach of support from here for only being here a couple of months."
Despite her having only attended the day care for short while, everyone at the center followed Sarah's treatment with great anticipation, according to Lisa Patterson, owner and director of the New Christian Learning Center.
"I'm really excited that we've had Sarah as part of our program," Patterson said. "Sarah is a very special little girl to many here at our center. She has shown us the true meaning of prayer. She has shown us the true meaning of what a miracle is."
Sarah is a miracle for her parents, of course, but Joe hopes that she is also a symbol for others, a sort of light and example for other families who might be setting offer down the seemingly dark and uncertain path of pediatric cancer treatment.
"Sarah gives parents hope," he said. "She is the poster child, that's what you hold on to."
When she thinks of Sarah's future, Kenyatta can't wait to see what she will do next. When it comes to negativity, her faith in her daughter never waivers.
"People go, 'Oh, you know they say your daughter isn't cancer free until five years?' Yeah, I know that. 'You know they say this type of cancer comes back on these little kids and it can kill them.' Oh yeah, I know that too," Kenyatta said. "But Sarah's fine. Sarah's going to live to tell the story, she's going to have a testimony at the end."