Hannah Harley

First post: Oct 18, 2018 Latest post: Oct 8, 2019
In August 2018 my daughter Hannah, then 6 years old, began throwing up almost every morning. She would vomit up stomach acid within 10 min of waking each day. We saw her pediatrician, who after giving her a blood test for food allergies and sensitivities, sent us on to see a gastrointestinal (GI) doctor. By the end of September, he had done an abdominal ultrasound and an upper endoscopy.  

On Monday, October 8th Hannah was home from school for Columbus Day and while watching TV, she commented: “Mommy, I see 4 of them”. Two days later we saw her GI doc for a follow-up from her scope. When we walked into the appointment he said everything looks good and he saw no issue to explain the vomiting. At this point it was happening every day and multiple times most days. Even to the point she couldn’t keep any food down for consecutive days. She was also beginning to lose weight. When I told the doctor all that, he asked if she was complaining of headaches. I said no, but she did just start complaining of double vision. Her GI doc told me to get an MRI of her head and if I couldn’t get it scheduled within a week, to call and he would admit her to the hospital, for fluids, to get it done quicker.

On Monday, October 15th Hannah went for what was supposed to be a no-contrast MRI. After about a half hour they came in and said the doctor needs to do with contrast now. The whole process was traumatic enough for Hannah, who hated needles by this point, that she threw up again on the MRI table. She also saw her eye doctor that same morning and confirmed her double vision.

On Tuesday, October 16th the GI doc called me at 4pm to tell me there was a mass in her head and a neurosurgeon would be calling me soon. About 20 min later the neurosurgeons PA called and explained that Hannah had a very serious mass and we needed to take her to Lutheran General Children’s Hospital (about 45 min drive from us) right away to have her admitted through the ER and that she would need surgery in the next day or two.

On Wednesday, October 17th my sweet girl, my firstborn child had a 4.5 hour craniotomy to remove a golf ball sized tumor from her brain. The surgeon told us the tumor was on her “vomit center” and up against but not infiltrating her brainstem. He had to separate the cerebellum to complete a full resection of her tumor. Pathology report came back as a Juvenile Pilocytic Astrocytoma. Throughout her 11-night PICU stay, hospital staff kept telling us that was “the kind of tumor you want to get, if you have to get a tumor at all”. 

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