In 1997, when Haley was 5 years old, she was diagnosed with a rare genetic disorder, Neurofibromatosis 1 (NF 1). No one in the family has this disorder and therefore hers was a spontaneous genetic mutation. A number of doctors through the years told us not to worry about NF 1, that it's often asymptomatic. In Haley's case they were wrong and although MRI's were performed regularly for many years to monitor an Optic Glioma, as her mother I regret not taking a more aggressive approach to having Haley monitored. On 12/8/2019, after fainting at work, Haley was diagnosed with an inoperable brain tumor, a grade 2 Diffuse Astrocytoma of her Thalamus. During an attempt to place a shunt in her brain on 12/10/2019, she coded in the OR and it took the team 10 minutes to revive her. For two days after she coded doctors told us she would not survive. She was in extremely critical condition for a number of days. We were blessed that so many people prayed for Haley and we know God heard our prayers. The only apparent long-term deficit from the code is her vision which is now poor. Another attempt to place a shunt on a later date had to be aborted due to bp issues. Further testing revealed she had a pheochromocytoma, a rare tumor of the adrenal gland. This pheo , which is also a product of her genetic disorder, is what caused her to code on 12/10/2019 and prevented a second shunt placement. On 1/21/2020 her left adrenal gland, along with the pheo, was removed. During this same procedure a VP shunt was placed. As of 2/15/2020, her shunt is working well and pressure issues in her brain have been resolved. She is gaining strength, recuperating well from her 7 weeks in ICU at Augusta University (aka MCG). It was not possible to treat her tumor during her weeks in the ICU. Now that she is home, we are continuing to search treatment options for her tumor as we start the next part of this journey.
On May 12, 2021 Haley went to be with the Lord. Her passing was very peaceful and we know she is happy now and free of pain and worry. Thank you for all the prayers.
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