This year has not been an easy one for our family. Back in December of 2016 Hailee went to see her neurologist, who she sees annually for a genetic condition called neurofibromatosis. We were concerned because she began having frequent headaches that Tylenol did not seem to curb. Her doctor wanted to get an MRI just as a baseline since she had never had one done before, so it was scheduled in early January. No one really expected much since seeing some abnormalities is typical with NF (neurofibromatosis). We received a call a few weeks later from her neurologist telling us that Hailee has been diagnosed with bilateral optic gliomas, a pilocytic astrocytoma in her brain stem, and a left basal ganglia tumor which is in the center of her brain. All of which are benign.
Since the discovery of these tumors we have been seeing an ophthalmologist every 3 months to watch the optic gliomas and make sure they're not causing vision problems and an oncologist to monitor tumor growth.
On June 26th Hailee had a follow up with her neurologist. At this time the doctor expressed concern about Hailee's inability to grow and gain weight. After a recheck of the MRI results from January, it showed an under sized pituitary gland. Which sent us to an endocrinologist and a neurosurgeon within the following few weeks.
On July 18th Hailee had another MRI and a follow up with her oncologist. This scan showed a 5mm growth in both directions of the left basal ganglia tumor and the discovery of a severe blockage of the flow of spinal fluid from her brain into her spine. Which has been diagnosed as a chiari 1 malformation.
Today, August 10th, we met with her neurosurgeon to discuss treatment options. Through discussion with the neurosurgeon and the oncologist It had been decided that it will be best for Hailee to have chiari decompression surgery sometime probably within the coming month since she is symptomatic.
The growth in the left basal ganglia tumor will continue to be monitored regularly as it is currently not believed to be causing any symptoms or issues. But we have began discussing potential treatment avenues for if/when the time comes where we need to address it.
- Christina Bloom
- Kimberly Murrell
- S Andress
- Sarah Nelson
- Tanya Meyers
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