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Leah Nora Nelson
Jun 14, 2017 Latest post:
Apr 3, 2019
On May 15th, Leah had an MRI because she had been struggling with some health problems, which led to blood work and then an MRI. They discovered a thickening of the pituitary gland, stalk, hypothalamus and optic chiasm. On May 26th, Leah was referred to oncologist, Dr. Ann Bendel, at Children’s Hospital in Minneapolis. She called Maren & Chris that Friday night at 8:00 PM & gave them a list of some possible diagnoses: infection, auto immune or tumor.
May 31st was the start of three days of intense tests including X-rays, a full physical, TB test, MRI of spine, spinal tap and blood work along with meeting with the oncologist, Dr. Bendel. Leah also had 2 ophthalmologist appointments to test her peripheral vision and look at her optic nerve.
On Friday June 2, Leah had a water deprivation test with an endocrinologist, Dr. Abuzzahab, because one of the previous tests had indicated diabetes insipidus. Leah had to quit drinking water at midnight and then checked in at Children’s at 8 am. Dr. Abuzzahab was wonderful with answering all the questions and spent a lot of time explaining the diabetes insipidus. Leah was not allowed to have any water & they took blood and weighed her every hour. Shockingly she continued to lose water and lost 1 pound an hour. After 5 hours and losing 5 pounds they stopped the test but had gathered the information they were looking for: diabetes insidious was confirmed which explains the months of fatigue, constant thirst and anxiety symptoms. This is a result of what is happening in her brain but what is happening in the brain is still unclear.
The good news is that all of her other organs and hormones they checked are working well! They gave her a shot of desmopressin, which replaces the vasopressin hormone that her body is not producing. This is the hormone that tells the kidneys to keep water in the body and controls hydration. Within 30 minutes of taking the medication she had saliva in her mouth and began to feel hydrated for the first time in MANY months.
With the exception of being diagnosed with diabetes insipidus, all the other results came back inconclusive or clear which means a biopsy surgery needs to happen next to determine if the thickening on her pituitary gland and surrounding area is an infection, auto immune or tumor yet.
Saturday, June 3 - Monday, June 4 The desmopressin medication has been a miracle drug for Leah! For the first time in months she has been able to sleep through the night without getting up multiple times to drink water and go to the bathroom. She basically slept for 3 days straight with a few breaks for food, water and tv. We thought she was dealing with anxiety but now realize she was suffering with dehydration. The symptoms are very similar. Leah had been drinking 15-20 large water bottles of liquid every day, which was keeping her body going. But she was sleep deprived from getting up so much and her body was fatigued and shaky!
June 7th Leah’s surgery is scheduled for June 15 at 8 am at Children’s St. Paul. Maren, Chris & Leah met with the team Dr. Bendel coordinated for Leah’s upcoming biopsy surgery & care. They met with the neurosurgeon, Dr. Kebriaei. He spent 45 minutes with them explaining biopsy surgery procedure. It will be about a 4-hour surgery and they will be going through her nose and sinus cavity to biopsy the pituitary gland. He answered all of their questions and made them feel very confident in his abilities and genuine care and concern for Leah. Dr. Abuzzahab came in to check on Leah’s reaction to the desmopressin. Dr. Bendel came in to talk about everything & explain that Leah will need to stay 2 to 3 nights in the hospital post-surgery. The medical term for her biopsy surgery is: Endoscopic Transnasal Transsphenoidal Biopsy of the Pituitary
Leah has been so well cared for by Dr. Bendel and her team as well as all the other nurses, physicians, technicians and caregivers. We are grateful she is under Dr. Bendel's care in such a top-notch medical facility.
We are hoping and praying for a smooth successful biopsy surgery, diagnosis that is easily, successfully and fully treatable and a quick recovery.