A community cares for Kaley

Brandon girl battles rare cancer

 

Kaley Maassen loves nothing more than to play outside with her brothers and neighborhood friends. She cherishes swinging on her swing set, riding her bike and caring for her baby dolls.

But a rare form of cancer has since sidelined her from the usual summertime fun most 9-year-old girls look forward to, and instead has placed her in a hospital bed at the Sanford Castle in Sioux Falls.

“She’s just a typical (little girl) but since she’s been sick we haven’t been able to play outside or do anything, and she’s really missing that,” shares her mother, Brooke. “Every single day, about 20 times a day we hear, ‘When can I go home?’”

Born with chromosome 6 deletion, which can affect developmental delay, intellectual disability, and distinctive facial features, Kaley has defied the odds and as her mother explains, was having the best year of her life until this past April. That’s when Brooke and her husband, Joel, noticed their daughter wasn’t her usual self. 

“About the full year before she was diagnosed, we felt, was her best year,” Brooke said. “She was starting to become more active and just felt the best she had felt in a long time, so that’s why when she started to become sick, we were like, ‘Oh, no, are we taking steps backwards?’ You just never know when you have a chromosome condition like that.”

A high fever hovering in the 106, 107 range, however, was cause for concern.

“We kept her home just because we thought she had some kind of virus or something. I think she was able to go to school a couple days that last week but the fever kept coming back. At that point, we brought her to the doctor, did a couple of blood tests and then waited,” Brooke recalls.

Two days after the school year ended – Friday, May 26 – Kaley was admitted to the Sanford Castle. A CAT scan soon revealed a mass. 

“They weren’t really sure what it was,” Brooke said. “We went home the next day with no answers and over the next six weeks it was nothing but hospital stays, blood work, testings, MRIs, infectious disease was involved, an oncologist got involved and then finally what diagnosed her was doing the bone marrow and then they found lymphoma in the bone marrow. But the next week after that they just were not sure what that meant because with all of her scans they never saw cancer anywhere else, so they couldn’t officially say it was cancer. Then came the PET scan and they saw the cancer was also in her bone marrow and in her bones, so lymphoma (large B cell lymphoma) was confirmed.”

The Maassens were taken aback, as their little girl had already been through so much in her young life. 

“It’s definitely nothing we were ever expecting, especially with a kid who has already been through so much,” Brooke said. “With Chromosome 6, she is missing part of the sixth chromosome and it’s caused a lot of issues over the years that started at birth. She had her first surgery on her spine at two months old, feeding difficulties and yeah, she’s had many, many surgeries and a NIC-U stay.”

The large B cell lymphoma is a fast-growing cancer, Brooke explains, which warrants an aggressive treatment and on and off extended hospital stays. 

“We’re here four solid weeks now and then we’ll go home for about a week and a couple days, and then we’ll come back again,” said Brooke, who tag teams time at Kaley’s bedside with her husband, Joel, a diesel mechanic.

“We can’t be here all of the time because we have two other kids,” she said, noting Kaley’s brothers, Kyle, 12, and Kaden, 4. “We don’t get family time very much. We don’t get time at home. I just miss the simple things, like doing my own laundry, eating together as a family. I see so many people do fun summer things, and we just can’t do that. Just a simple walk at night is something we would enjoy. At this point we just have to be here, and hopefully it’s temporary. We’re not strangers to this kind of life at the hospital but this being more of a long-term thing has been more difficult.”

Brooke also is due with the couple’s fourth child in late December. 

Her sons, Brooke said, simply miss being with their sister in familiar surroundings.

“Our oldest one has asked the most (questions). Right away he was very concerned, like, ‘Is she going to make it? Is she going to pull through?’ He didn’t want to think about losing his little sister. Our 4-year-old I don’t think knows a lot about cancer, it’s just his days are completely turned upside down and I don’t get to be with him as much, and being a stay-at-home mom he’s very used to being with me, so yeah, it’s really changed all of our lives,” she said.

During her stays at the Castle, Kaley faces an aggressive treatment plan.

“When she’s here there’s some kind of treatment daily, and she will have very frequent PET scans, bone marrows, lumbar punctures, there’s just a lot that goes into a treatment like this,” Brooke said. “And she’ll still be in treatments, even when cancer does end, it doesn’t end. You still have a lot of doctor appointments and you still are going to be followed very, very closely, they said, by the cancer doctor.”

The lymphoma Kaley has is treatable, but as Brooke says, “You can never be 100 percent sure with any cancer, but they’re hopeful. All you can do is go through treatments … and this one has a possible cure.”

Brooke says her young family has been blessed with support from family, friends and the Brandon community, where they’ve made their home for 14 years. Meals for the family, snacks for the kids, offers of help with day to day life have all come forth, in addition to unexpected donations and fundraisers.

One such offer came from the Ed Polzine Wild Game Feed.

“I just got a phone call one day from someone I’d never talked to before, and he said, ‘We heard of Kaley’s cancer and want to help your family.’ It’s surprising. This community and this area, I think, really surrounds a family going through something like this,” Brooke said. 

The organization stages an annual wild game feed to raise money in support of kids like Kaley.

The family is also grateful for the “simple things” being done for them.

“Meals that people have given, a T-shirt fundraiser for her, someone dropping off a box of snacks on my doorstep for the kids, you know, juice boxes and little snacks, and the MOPS group I’m a part of in Brandon has been great, too. One lady has said, ‘Every Monday night I’m bringing you a meal,’ so they set up a meal train, or someone brings me lunch here at the hospital. There are so many things,” she notes. “You definitely can’t walk this alone.”

While the support comes in many ways, the Maassen’s are appreciative of the cards, goodwill wishes and of course, prayers. 

“Kaley every day says, ‘People are praying for me?’ and I say, ‘Yep, you have a lot of people praying for you.’ Just knowing that people care is really just the biggest thing for us,” she adds. “When you go through something like this, it’s amazing how a community comes together.”

A Pray for Kaley Page on Facebook is where the Maassen’s are keeping family and friends updated on Kaley’s status.

The Brandon Pizza Ranch also has scheduled 5 to 8 p.m. Monday, Aug. 14, as a fundraiser for Kaley Maassen.

“If she’s healthy, we hope to go if her numbers allow us to go,” Brooke said.

Kaley, who will be a fourth-grader at Robert Bennis Elementary this year, will be in and out of the classroom, her doctors say. 

“They said school for her will be really spotty. She probably won’t get to go a lot, but if she’s feeling good and is at home, she will probably get to go a couple days here and there,” Brooke said. “We have no doubt that the (school district) will do whatever they have to do to get her through the school year. What’s wonderful about that school is a lot of the aides that have worked with her have come up to see her at the hospital, sent get-well cards. We’re just thankful that so many people care about her and love her, and it’s really shown throughout this process.”

Beary, a Teddy bear gifted to her by the RBE lunch ladies, is one example of the care and love that’s been shown to Kaley and her family.

“Kaley’s kind of taken the heart of some people,” Brooke says.

When Kaley was first diagnosed with chromosome 6 deletion, someone sent the Maassen’s the “Welcome to Holland” story, a prominent essay written in 1987 by Emily Perl Kingsley, about having a child with a disability.

“It’s a story where you expected ‘Italy’ when you had a child, you expected it to be a certain way, and when it wasn’t, you just have to change your view and just try to enjoy the beauty of every day of what you’ve been given,” Brooke shares. “So, that story has stuck with us, because Kaley is who she is supposed to be. She is the first kid that is going to come and give you a hug, she always has a smile for everyone. She’s very, very loving and tells us she loves us about a hundred times a day.”

 

IF YOU GO

What: Pizza Ranch Fundraiser for Kaley Maassen

When: Monday, Aug. 14, 5 to 8 p.m. 

Where: Pizza Ranch, 202 Splitrock Blvd., Brandon

Other: A portion of dine in/carry out sales directed to the Maassen family