Tatiana A. - Quilt Finished in 2005
Born: January 5, 2004
Illness: Macrocephaly, Optic Glioma Juvenile Pilocytic Astrocytoma, Stroke, Diabetes Insipidus, Panhypopituitarism, Blind (no light perception), Adrenal Cortical Insufficiency, Hypopituitarism, Hypothyroidism, and Nystagmus
A Special Thank You From Tatiana's Family!
Written May 6, 2005
Tatiana loves the quilt. She is still in stable condition and some of her medicines have been decreased and she has been taken off of others completely. We are very thankful for her progress and that she is still a part of our wonderful family. Thanks!
Crystal, Tatiana and Family
Tatiana's Story
written by mom Crystal
Tatiana was born a healthy happy baby girl on January 5th, 2004 in Coos Bay, Oregon. A month after that we moved to Orlando, Florida. Tatiana started having wiggly eye movements in May and took her in to have her checked out. She was diagnosed with Nystagmus. Then in August she was diagnosed with Macrocephaly because she had a head measurement that was higher than normal. So we got a cranial ultra sound done, then a ct scan, then finally a MRI. We were told that she had a lemon sized brain tumor that was engulfing her pituitary and coratid artery and that she needed surgery right away.
On Sept. 21st, 2004 at Arnold Palmer Children's Hospital she had a craniotomy with biopsy. She was diagnosed with Optic Glioma Juvenile Pilocytic Astrocytoma but it had also metastasized to the lining of the brain. After the surgery she had seizures and then a stroke. She was put on anti-seizure medication right away. Thankfully the stroke didn't seem to affect her.
Since the pituitary gland was affected she developed other problems as well...Diabetes Insipidus and Panhypopituitarism. The surgeon left 5% of the tumor on the optic nerves because he didn't want to have to cut them out, but she is still blind. She is developmentally delayed so she is getting therapy and doing better. We are also currently working to get her into St. Jude Hospital.
Written by Tatiana's mom Crystal
