Huxli’s Story

Site created on March 12, 2021

Welcome to Huxli’s CaringBridge website. This is Huxli’s mom, Emily, trying to let friends and family know what is going on. Bare with me as I try to explain her story and current situation. I am not a writer but will try my best! Huxli is about 17 months old. Huxli’s story started with her vomiting on Sunday evening 3-7-2021. This continued into the week until she started to become very sluggish on Wednesday. We took her into the clinic which they sent us over to the ER due to possible dehydration. After tests were done the only conclusion was dehydration but no other things appeared wrong. Now came Thursday; Huxli seemed a little better that morning but continued to sleep with sips of juice throughout the day. At about 4pm she started crying and became very stiff (later on found out this was probably a seizure). After this episode she appeared to stop breathing and became unresponsive. I called the ambulance and she was taken to the ER again. There they did more tests including a CT scan. We were told by the MD that there appeared to be bleeding in the back of the brain with a mass of some sort which was causing build up of fluid in the brain. This pressure was causing Huxli to vomit, have irregular breathing and heart, and the seizure. She was sent via helicopter down to the Children’s Hospital in Minneapolis.  There they immediately got her into surgery to place a tube in her head to drain the extra fluid build up. They then took an MRI and confirmed it is a tumor. At this point there is a lot of “maybes” and “we don’t know yet” on what kind of tumor and what treatment is going to be needed. The intubation tube was removed early afternoon Friday and we had some worried moments with her irregular breathing but it appeared to straighten out for the most part and she even cried a little soon after (which is a good thing due to the tubing can damage the airway).  She soon was able to take her pacifier. At this time it is a waiting game to see what is found during surgery which is not planned until Wednesday March 17th. We will know what kind of tumor and what needs to be done after the see the tumor and are able to run tests on samples. We are in this for the long haul. I hope this helps everyone understand what is going on. 

Newest Update

March 11, 2024

Journal entry by Emily Pete —

Now that we've finally made it back home from Minnesota from Huxli's appts (and we've had a few days reset) I can say she is tumor/cancer free! 

This girl is such a trooper! Hux was in a vehicle over 21 hours last week due to having to travel back to Minneapolis Children's Hospital for her appts and MRI. Then how stinking brave she was when they started her IV (I know adults that can't sit still when getting an IV and this girl didn't even flinch!) She also got horribly car sick on our way back home. But she still went to school the next day and was excited for it!

The only issues now are that her thyroid is not functioning properly (which is common due to the  types of cancer treatments she went through) and she will most likely have to start on a growth hormone soon.

Otherwise, her Oncologist, neurologist, OT, and Endocrinologist were all surprised how well she's doing physically and socially! She made her rounds to each doctor/medical staffer  and wanted them to play with her and/or pick her up. This is huge for Huxli! Her doctors and us agree that school has been the biggest factor how far she's come socially/physically. Shout out to her school, preschool, and teachers here in North Dakota❤️. They go above and beyond for this girl and we appreciate them more than they can know!
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