Community rallies support for girl with rare brain cancer: Benefit to be held May 1
by Trinity Gruenberg
The community has rallied around a rural Hewitt couple as their 18-month-old daughter fights a rare form of brain cancer.
Little Huxli Collom is the daughter of Joe Collom, 32, and Emily Pete, 34, and the youngest of her siblings, brothers Dominic, 13, and Peyton, 9, and sister Athena, 3. Peyton is a second-grader at the Bertha-Hewitt School.
Joe is a 2007 graduate of Bertha-Hewitt and operates his own machine shop. Emily is a 2005 graduate of Wadena-Deer Creek and works part-time as a nurse.
On March 7, Huxli started to become sluggish. Emily took her to the clinic three days later and was sent to the ER for possible dehydration. Tests didn’t reveal anything wrong with Huxli.
The following day she slept and sipped on juice. Later that day she began crying and became stiff. They learned later on this was due to a possible seizure.
She appeared to stop breathing and became unresponsive. Huxli was taken to the ER by ambulance where more tests were conducted, including a CT scan. This scan showed a possible brain bleed and a mass on the back of her brain causing a fluid buildup.
The mass created pressure which caused Huxli to have irregular breathing and heart rate, vomiting and the seizure.
She was flown by helicopter to Children’s Hospital in Minneapolis to have immediate surgery. They placed a tube in her head to drain the fluid buildup. An MRI scan revealed a brain tumor. It was unknown what type of tumor.
Another scan was performed to ensure the tumor had not spread to her spine. Much to the family’s relief, it had not spread.
On March 17, little Huxli underwent a seven-hour surgery to remove the tumor. Thankfully, the surgeons were able to remove it all.
On March 24, the biopsy of the tumor revealed it was an Atypical Teratoid Rhabdoid Tumor (ATRT) type tumor which is rare and aggressive. This type of tumor is so uncommon only 58 people were diagnosed with having one last year, and less than 16 were adults. An estimated 596 people are living with this type of tumor, with a five-year survival rate of 32 percent due to the aggressive nature of the cancer.
This type is found in less than 10 percent of children with brain tumors and is most often seen in children under the age of three.
Three days later, surgeons had to install a shunt to drain the cerebral spinal fluid that was building up in her brain.
Due to the aggressive nature of this cancer, Huxli will undergo several rounds of chemotherapy and radiation for the next several months. She had her first round of chemotherapy on April 1 for nine days, and she will receive three more rounds.
Huxli is regaining use of the left side of her body after brain surgery. She is also undergoing intensive physical, speech, and other therapies that are going well. She even got a visit from a therapy dog named Piper.
At this time, Huxli is unable to hold her head up on her own. She has fought high temps, nausea, and reduced appetite from the treatments.
Emily explained after the brain surgery, Huxli was like a newborn baby and she has to relearn things.
“She was a normal 17-month-old before this all happened,” Emily said. “She’s coming back to us slowly with therapy.”
Huxli is currently at the University of Minnesota in The Cities as doctors are collecting stem cells to be used in her chemo treatments. Due to the different chemo treatments, Huxli is splitting her time between the University of Minnesota and Children’s Hospital. Two rounds of chemo at Children’s, and three rounds, 30 days each round, at the University of Minnesota with the stem cell chemo, followed by six weeks of radiation to be done at the Mayo Clinic.
The family has to stay within 30 miles of the hospital. The parents have figured out a routine. Emily stays with Huxli during the week, and Joe stays with her on the weekends. Due to COVID restrictions, they are the only ones allowed to be in the hospital with their daughter.
They are hoping a grandparent will be allowed in for a day so both parents can attend the upcoming benefit to be held at the Woodtick Lounge on May 1.
They are very appreciative of their close friends and families for the constant support.
“She’s getting better every day. We even got a smile out of her,” shared Emily. “She has a long way to go, but she’s getting there.”
The community has stepped up to help Huxli and her family. Drastic Measures raised just over $3000 by donating 50 percent of their proceeds on April 13. Owly Bean Roasters created Huxli’s Corner filled with coffee beans for sale, with 50 percent going to Huxli. Now and Forever Wedding Gallery is donating 10 percent of all proceeds from the month of April. The Bertha-Hewitt School held a Hats for Huxli day on April 23. Students paid $1 to wear a hat to school. They also sold ice cream treats with all the proceeds going to Huxli and her family. There are several other fundraising efforts including T-shirt and greeting card sales.
A GoFundMe page, under Help Huxli in her Fight Against Cancer, has been set up to assist with expenses. It has raised over $5000 so far. Monetary donations can also be dropped off at Wadena State Bank under Huxli or Huxli’s Benefit.
“It’s a little overwhelming with all the support and help. Instead of say ‘no, we don’t need help,’ we’ve learned we may need the help,” explained Emily.
A benefit will be held on May 1 at the Woodtick Lounge beginning at 3 p.m. with a split-the-pot, silent auction, and a DJ.
Contact for benefit donations is Heather Sand 218-296-1806.
You can follow updates on Huxli at www.caringbridge.org/visit/huxlicollom.