Erin M. - Quilt Finished in 2006

Born: February 6, 2001

Illness: Optic Chiasm Glioma, Blind, mild hearing loss,

seizures, unknown sleep disorder

Erin M.'s Story

written by dad Michael

Erin was born in February 2001, and she was the joy of our lives. One thing that always stood out in our young parental minds was, why did our daughter never sleep longer than 2 hours at a time. Most other parents we knew, told us that it would get better with time. It did not. We also wondered why Erin would have screaming, not crying, screaming fits that would last longer than an hour. She developed eye spasms. The pediatrician also told us that the screaming fits and spasms would come to pass with time. Neither did.

Erin also started to crawl with one leg straight, while the other was bent. When we asked about this, we were told that Erin was trying to walk.

At ten months, the real problems started. She started to bang her head against anything hard, including the walls in our home and our hardwood floors. This was in addition to vomiting for an entire month. She also developed Nystagmus in both eyes. We took her to a neuro-ophthalmologist who immediately scheduled an MRI.

A week after Erin's first birthday she was diagnosed with a brain tumor that was the size of a golf ball called an Optic Chiasm Glioma (Hypothalamic). At that time, her head was barely larger than a softball. Ten days after diagnosis, Erin had brain tumor resection surgery.

Complications from surgery left half of the tumor in Erin's head and left her blind. She suffered seizures several times a day as a result of Cerebral Salt Wasting (which is the renal loss of sodium associated with intracranial disease) during her recovery time in the hospital.

The pathology of the tumor showed that it was a slow growing Glioma.  Erin began her first round of chemotherapy in June 2002. She continued until October 2003. Afterwards, the tumor showed stabilization. For the amount of chemotherapy that was put into Erin, the tumor should have remained stable for a long, long, long time. It did not.

During a routine MRI scan on May 27th, 2004, the tumor had shown 15% growth in size and mass, since the previous MRI scan three months prior. In June 2004, Erin spent three days in the hospital for treatment of intracranial pressure. In July 2004, Erin began her second round of chemotherapy.

After 10 weeks of treatment another scan was completed. It showed that the chemotherapy was not effective. Treatment was stopped. Consultation was started with a brain tumor team, that included a brain surgeon, a radiation oncologist and with the two oncologists that were already treating Erin. Due the rapid growth of the tumor, it was determined that surgery was not a viable option. We were left with only one option, radiation.

Radiation treatments began in October 2004 and continued for six consecutive weeks. Treatment was completed on December 2nd, 2004. The effectiveness of the radiation treatment will not be known until February 2005.

Since birth, Erin still does not have an established sleep cycle. All the doctors agree that she may not ever have a regular sleep cycle due to the tumor. We found out in January 2005, that Erin has also suffered a significant hearing loss in her right ear. This is the result of her treatments to stop the spread of the tumor. In addition to the MRI's Erin gets every three months, she will now have to have hearing tests as well. Finally, Erin had three portable catheter surgeries.

Erin's mom Dad in Spring 2005