JEFFERSON — Advice from a child who’s had cancer:
“Sure, you can ask how I’m doing, but talk to me about other things too. I want to be treated as a normal kid, not just a diagnosis.
“Understand if I’m just not up to interacting right now; having a serious illness — and the whole recovery process — can be exhausting and emotionally draining.
And above all, don’t stare! It’s rude!”
Almost two years after her diagnosis of leukemia, Addison Houston, 11, of Jefferson, looks great.
Her bouncy, light brown hair has grown back in — what a relief — and her weight has returned to a normal, healthy number after bottoming out in the early stages of chemotherapy.
And she no longer has to deal with a feeding tube, which was uncomfortable and made her feel embarrassed.
In fact, an outsider wouldn’t know just by looking at her that she’s still undergoing the final stages of her two-and-and-half years of chemotherapy treatment.
Addison, a Jefferson resident who just finished the fifth-grade at East Elementary School and will be moving up to the middle school in the fall, forever will be changed as a result of her bout with leukemia.
For one, her strength and willpower has been tested as she has overcome challenges few have to face — especially as a youth.
But most importantly, the Jefferson girl has gained an acute sense of empathy for those who look different, born out of painful experience.
It was September of 2017, the first week of school, when everything went sideways for Addison and her family.
Addison had exhibited no symptoms prior to that day. She’s already attended her first few days of fourth-grade and was doing fine.
Addison’s mom, Kendra, was pulling her hair back into a ponytail as they got ready for another school day, when the girl told her mom, “I don’t feel so good,” and fainted.
Knowing something was really off, the family took Addison to Fort HealthCare, where she was tested for the flu and other common ailments. As a precautionary measure, the hospital also took her blood to rule out more unusual problems.
Everything seemed fine and the family was prepared to return to their regular schedule when they heard that some of Addison’s bloodwork came back abnormal.
So she was sent off to American Family Children’s Hospital in Madison.
The next year marked a series of treatments and hospital stays.
Fortunately, the family has only good things to say about the Madison children’s hospital, associated with the University of Wisconsin-Hospital.
Addison said she loved her nurses, and the family felt her care was handled extremely competently by the team of doctors and other medical professionals.
The standard course of treatment for girls with leukemia runs two-and-a-half years.
Addison had medical appointments weekly, and often several times a week, and many hospital visits, during which she endured numerous blood and platelet transfusions and lumbar punctures, not to mention intensive chemotherapy.
Addison also has taken daily oral chemotherapy once a day. (“Ugh!,” she said.)
Every four weeks, she receives chemotherapy through a port installed in her side. Then every third month, she receives a spinal tap, as well as some chemotherapy through her spine.
The treatments are, to put it mildly, not fun. Initially, when she was receiving the highest doses, the medicine made her really sick and she pretty much spent all day in bed, Addison said.
“When it first goes in, it isn’t that bad,” the Jefferson girl said. “But later on, it makes you feel horrible.”
Addison missed almost all of her fourth-grade year at East Elementary School due to her ongoing medical needs. She went back to school for a week, but was not able to keep up the pace due to ongoing weakness and pain. Plus all of her hair had fallen out due to chemotherapy, making her profoundly self-conscious.
Finally, her family was concerned about her picking up some nasty bug from one of her classmates during “flu season” while her immune system was suppressed.
As a result of her ongoing medical needs, Houston largely was homeschooled during fourth-grade. The School District of Jefferson sent a homebound teacher, retiree Dawn Voss, whom the family said was incredible.
Though she is slated to continue chemotherapy through mid-January of 2020, Addison had gotten through the toughest part of her treatments and was ready to return to school for fifth grade, finishing out her elementary career at East.
The Jefferson girl said that this past year also brought some challenges as she reacclimated herself to the classroom while still going through regular treatment and monitoring.
She said there were things she really liked about going back to school, though, like science class and being able to perform with the school choir. She also has great memories of a trip to the Milwaukee Public Museum and seeing butterflies.
Early on in Addison’s treatment, the high doses of chemotherapy she faced caused excessive nausea and mouth sores. Meanwhile, every fever required a hospital admission, per doctor’s orders.
Addison didn’t feel at all like eating and had lost so much weight she had to have a feeding tube installed last July. Being able to receive sustenance through the tube when she just couldn’t face eating or drinking anything did help.
“It was kind of bothersome, though,” Addison said. “Getting dressed was a pain. You had to pull the tube through your clothes. I didn’t like going out places.
“The interesting part about that was that when I got the tube out, I had gotten so used to it that I’d try to move it when it wasn’t there,” Addison said. “Another weird thing was when I started eating again, sometimes the food would touch the tube and I could feel it.”
The chemotherapy, as often happens, caused her hair to fall out.
The girl said she was very conscious of attracting attention when she was going through the worst of her treatment. She was bald, she had a tube in her side and she just wasn’t feeling that great.
On top of the well-known side effects of chemotherapy — nausea and exhaustion — the treatments weakened her bones, causing compression fractures in her back. The neuropathy pain led to Addison having to use a wheelchair temporarily — and more uncomfortable moments.
“People are rude. Staring is just rude,” she said. “One time, I had this whole family staring at me.”
Addison is looking forward to getting off the chemotherapy for good in mid-January. That will mark a welcome end to the treatments, but it’s not an end to her medical journey, as she’ll face monthly doctor visits and labwork for some time to come to make sure her disease has not returned.
In the meantime, her entire family has been impacted by Addison’s illness. Obviously, a great deal of their time and energy — not to mention money — has been taken up dealing with leukemia. But there are less visible effects, too.
For her parents, there has been an overwhelming fear that the next doctor’s visit or the next test will bring more bad news.
For her siblings, that’s meant a loss of attention from their parents, and especially for the youngest, concern that their family wouldn’t always be there for them.
And on top of all of that, six months into Addison’s own cancer journey, her mom, Kendra, was diagnosed with thyroid cancer. Luckily, Kendra said, this was much more easily handled than Addison’s leukemia.
But all of these stresses wore on the family.
As they get closer to the end of Addison’s chemotherapy treatment, they feel like they can finally breathe a little easier, although that fear of a relapse always will be present in the back of their minds, Kendra said.
As things gradually leveled out for Addison this spring, the family learned that the Jefferson girl had been nominated as one of Tomorrow’s Hope’s “Hope’s Heroes” and been been selected to represent the local nonprofit organization at its annual fundraiser, Hope Fest.
The 2019 Hope Fest will take place Saturday in and around Jefferson’s Rotary Waterfront Park.
As an honoree, Addison has been asked to participate in the Ride with a Buddy Motorcycle and Classic Car Ride in the morning and to take part in the opening ceremony for the fest just after noon.
She is one of a handful of local residents — representing different illnesses and different experiences — who will serve as the faces of Tomorrow’s Hope for this year.
Kendra said she hadn’t been that familiar with Tomorrow’s Hope herself, but her aunt, Peg Bare, who has been involved for many years, contacted her about getting involved, and pretty soon the family received a phone call from Tomorrow’s Hope Executive Director Barb Endl asking them to participate.
Kendra said that the more she learned about Tomorrow’s Hope, the more she liked. The health-care nonprofit, centered in Jefferson and serving all of greater Jefferson County, aims to improve local health-care outcomes through funding medical research, education and prevention efforts, treatment and care throughout the area.
And Saturday’s Hope Fest, with an entire day of activities from a chess tournament and canoe float in the morning to a candlelight ceremony at night, seemed like a great opportunity for Addison to connect with other people of all ages who have gone through similar experiences to hers, Kendra said.