Huxli was diagnosed at 17 months old in March of 2021.
On March 7th Huxli started throwing up. We figured it was a bug of some sorts. When this continued and Huxli became more and more lethargic we took her to the doctor on March 10th. All the blood work, x-ray, and urine sample were clear of anything wrong except that Huxli was dehydrated. They gave her fluids and sent us home with instructions to come back in the next day to see her primary care provider. The next day, March 11th, we had a nasty snowstorm and we were unable to leave our driveway. I called the clinic and scheduled an appointment for the next days instead. Well, that evening at around 4pm Huxli had been sleeping. All of a sudden she screamed and her whole body became very stiff (we found out later that this was most likely a seizure). After this episode Huxli stopped breathing for a moment and that’s when I called the ambulance. The fire truck came down our driveway due to the snow and picked Huxli up to bring her to the ambulance at the end of our long driveway. She was transported to the ER.
Thank God for the amazing ER doctor that knew right away that something neurologically was wrong. They took a CT scan and we found out that Huxli had a mass in her brain that was most likely causing fluid buildup and that’s why she was so sick and had a seizure.
They life flighted Huxli to the Children’s Hospital in Minneapolis, MN. From there we found out that the mass was a tumor in the posterior fossa region of the brain (the back of the brain). Less than a week later on March 17th Huxli had surgery for her tumor removal.
They were able to remove 100% of the tumor!
On March 24th we found out that the tumor was ATRT.
Due to where the tumor was and how large it was Huxli suffered from posterior fossa syndrome. She went from a normal 1 year old crawling, walking along furniture, and babbling to like a newborn. She was unable to hold her head up. She didn’t even make any noises (not even crying). Her left side was completely immobile (similar to a stroke patient). Fortunately, she was able to swallow still.
She has made leaps and bounds since then with PT/OT/ST and music therapy! She currently (August 2021) is trying to say simple words again such as “momma” and “meow” like a cat. She can roll around from tummy to back and back to tummy. She also has been trying to get onto all fours and crawl. She can sit up on her own for a bit without anything behind her to prop her up as well! She can eat puréed foods and very soft foods and uses a sippy again. Due to her chemo treatments causing nausea she doesn’t eat very much by mouth.
She started chemo treatment on April 1, 2021. She has had two rounds of chemo and then 3 rounds of high dose chemo with stem cell transplant. She is finishing up her 3rd round of the high dose chemo and stem cell transplant now (or 5th round of chemo all together). After this chemo round she will be going down to the Mayo Clinic in Rochester, MN for 6 weeks of radiation Monday through Friday.
Huxli enjoys the little time she gets at home with her family and animals.
Update October 2022:
Huxli finished her 6 weeks of radiation in November of 2021. She then started maintenance chemo. She would get 2 chemo medications through her G-tube at home and every 28 days she would go into the Children's Clinic in Minneapolis to receive a chemo medication injected into her spinal fluid. Each of these rounds of chemo were 28 days long and she had 12 of them all together (so almost a year of maintenance chemo). Her last dose of this chemo is October 20th! She continues to have full brain and spinal MRIs done every 12 weeks to check for tumor regrowth and spinal taps to check for cancer cells in her spinal fluid.
The last time Huxli was hospitalized was in December of last year due to a fever so if she can make it the New Year this year, she will be a year free of being hospitalized!
On October 18th (2022), Huxli has an appt with her oncologist at Children's to go over her last MRI scans. If everything is clear (as it has been) her family will officially get to celebrate Huxli being NED (No Evidence of Disease!). Crossing fingers for this! It's been a long time coming!
Otherwise, Huxli continues to grow and get stronger. She continues to use a G-Tube for the bulk of her nutrition but with Speech Therapy she is finally able to chew and swallow small portions of food. She tires out easily and once that happens she starts to spit her food out again like she used to. It's just going to take time and muscle strengthening for her to be able to eat enough to not have the G-Tube.
Huxli has finally started to try and pull herself up to a standing position with furniture. She is still shaky and unsteady with this and has to have someone with her at all times so she doesn't fall back. Her crawling has improved over the summer, and she gets all over the house this way, so walking isn't as motivating for her it seems. But her family is looking into braces to help her legs and possibly a walker. She continues to see PT/OT weekly.
Her family shares, “It has been quite the rollercoaster with Huxli the last year and a half. As a family Huxli's diagnosis has made us slow down and enjoy the little things. We get to relive and enjoy all the milestones of a baby/toddler again and truly appreciate it this time. Life is never promised, and we must live it to the fullest while we can!”
Follow Huxli on Caring Bridge: https://www.caringbridge.org/visit/huxlicollom