WASILLA — “I’m at the hospital for chemo today.”
Unfortunately for 7-year-old Alexia Faith Holcomb, this — or some variation thereof — is how many of her days begin.
“I also needed a transfusion again,” she continues in her May 1 blog about her fight against embryonal rhabdomysarcom, a rare form of muscle cancer. “Since my throat hurts so bad I’m not eating very well even though I’m trying the best I can. I lost 1lbs (sic) this last week and am getting closer to my feeding tube. I am 58 lbs now. I’m trying super hard but not gaining any weight.”
For the Tanaina Elementary School second-grader, daily trips to Anchorage for radiation treatments and chemotherapy are about the last things she wants to do. On her blog, oursweetalexia.blogspot.com, she explains her disease in the way other kids can understand: “It is a rare muscle cancer. It is growing inside my neck and the doctors can not take it out.”
What can be done is 43 weeks of chemotherapy and radiation, said mom, Stephanie Holcomb.
“She’s been quite the trooper,” Stephanie said, adding she’s amazed at how resilient children can be. “She’s had to overcome a lot and she’s doing really well — amazingly well. I would struggle with what she has to do.”
At least for a couple of hours Friday, Alexia was able to put aside her cancer and be a kid again. She was quick to shed her coat and hat and join dozens of her classmates and their families at a fundraising social to help her family with costs associated with her treatments. It didn’t matter she had lost all her hair, and her friends were as excited to play with her as she was.
And the last thing Alexia wanted to do was talk about having cancer.
But the spirit of Friday’s event at Tanaina Elementary wasn’t lost on her family, said grandfather Ralph Holcomb.
“It’s over the top what everyone’s done,” he said. “It’s incredible.”
He also said he draws inspiration with how his granddaughter handles her illness.
“She’s really strong, probably more than I could ever be,” he said, adding that so far, Alexia’s treatments seem to be working. “She’s had a couple of bumps in the road, but the doctors are amazed at how well she’s doing. It’s going away. The one tumor they biopsied is gone and the other one has shrunk.”
That tumor is what touched off events that would change the Holcomb family dramatically, Stephanie said. It was Jan. 11, and she had taken Alexia to a doctor to check out a lump they found on her neck.
Her type of rhabdomysarcom, embryonal, is the most common and can manifest in the head and neck area, according to the National Cancer Institute.
While the diagnosis is scary, Friday’s fundraiser was a celebration of Alexia and families, said Deb Waisanan, a retired teacher who organized the fundraiser.
Alexia’s doing as well as can be expected, her mother said. But for one evening, she was back to normal, which is what Waisanan said was the most gratifying to see.
Waisanan has a granddaughter in Alexia’s class, “and I just thought, as a grandmother, I could not imagine my own (child) or a mother going through this,” she said. “I can’t imagine going through it myself. It’s taxing enough to have to emotionally go through all of that, but then you have to throw in the money part, the bills accumulate.”
Others in the community have also chipped in, like the folks at Vannoy Electric, who have created dozens of “monkey” boxes to sell. Each box contains a variety of goodies, along with a plush blue or pink monkey. The monkey boxes were inspired by Monkey, a large stuffed primate that sits in Alexia’s chair in her classroom when she can’t.
“The idea is for the monkey to sit in her chair when she’s not in class,” said Alexia’s teacher, Sue Hocker. “The monkey goes to PE, the monkey goes to music. It goes everywhere with the class.”
The monkey helps the young students interact and talk about some serious issues facing a classmate, Hocker said. Still, learning one of her students had such a serious condition was a shock, she said.
“The first thing I thought was, my heart was just, like, ‘Oh my gosh. I’ve never had a student who’s had such a serious illness before,’” she said. “Then, the thought was what can we do?”
In the classroom, students have learned about cancer from the school nurse “and we’ve talked a lot about it,” Hocker said. “At first, we had kids who had difficulty eating or were going home crying. We’ve had the nurse come in, we’ve done several lessons, we’ve read books.”
Then there are the visits from Alexia, Hocker said. She’ll come in when she can and while she doesn’t really talk about the cancer with her classmates, she doesn’t hide it either.
“Some kids know she’s sick but don’t realize just how sick, and other kids get it because ‘my aunt had cancer,’ ‘my mom’s friend died of cancer’ and they make connections to the word and people they know who have had it,” she said.
Classmate Delaney Reavis, 9, said she likes to write notes to her friend and put them in Monkey’s backpack.
“I found out a few months ago when our teacher told the whole class,” she said. “I thought that I never thought this could happen to someone in my class or someone I knew.”
“I thought it was pretty sad,” added River Kelly, 8. “She has cancer and I don’t know the name of it, like aboreal-something or whatever. I know cancer is deadly.”
Both classmates said that if they could give Alexia a message, they would.
“I guess I would probably say, like, ‘Hey Alexia, how are you doing?’” said Kelly.
“I want to say keep being strong and never give up,” Reavis said.
Contact reporter Greg Johnson at firstname.lastname@example.org or 352-2269.