Erin R. - Quilt Finished in 2006
Born: June 23, 2004
Illness: Ependymoma
A Thank-You from Erin's Family!
Written on August 8, 2006
We got the quilt. It is beautiful.. Thank you so much for all your effort and time. Erin loves it. What a wonderful past time you do for all the mac kids. Thank you!
Mary and Erin
Erin R.'s Story
written by mom Michelle
Erin was a chubby, happy and healthy baby. Our journey began in mid April 2005 when she was 10 1/2 months old. Because she seemed to be having cold/flulike symptoms, we took her to the pediatrician quite a few times and they told us she probably just had a virus that was going around and to give her a few days and she'd get better. That didn't happen and we ended up at the local emergency room on May 15. They ran some general tests which all came back normal. Since Erin was so lethargic they decided to keep her overnight for observation. They did more tests and those came back clear, too. The next morning, the doctor told us that the only thing they hadn't done was an MRI of Erin's head to see if something there might be causing the problem. They transferred us to Children's Hospital by ambulance on May 15 for the MRI. When we arrived at her room, Erin had a seizure and once they stabilized her they took her right down for an MRI. That's when they told us she had a tumor and would need surgery as soon as possible. The first surgery was at 7:00 am the next day and lasted six hours. The tumor was diagnosed as an Ependymoma.
After that surgery, she was in Children's for two weeks, then we went to a rehab hospital because Erin was unable to swallow thin liquids which is a common side effect from this type of surgery. While at rehab, she came down with a fever so back we went to Children's for another week. Then back to rehab until June 22 (the day before her 1st birthday). After a week at home, we began the process of starting radiation treatments which involved another MRI. The day after we did that MRI, Erin's neurosurgeon called with the bad news that there was now some tumor showing up that must have been too small to be seen at the original surgery and that Erin would need another surgery. This tumor was about the size of a pea, which is not too bad when you consider the size of the original tumor was walnut sized. But the bad thing is that it means that Erin's tumor is a very fast growing one. It grew to pea sized in 9 weeks. Erin's tumors were located in the 4th ventricle of her brain. The doctors assured us that this tumor would be much easier to remove than the first one since it was so much smaller and Erin's recovery would be much faster. That surgery was July 27 and lasted 4 hours. Erin was back at home after 4 days and back to doing her usual things by 2 weeks post op.
This time the doctors moved pretty darn fast to get Erin started with the radiation. Her first day of treatment was August 16, less than 3 weeks after her 2nd surgery. Radiation ended September 27, 2005.
Erin only had 2 clear MRI scans after radiation ended. At a routine MRI in May 2006 a spot was discovered. We waited 2 months and went back for another scan July 5, 2006 which showed that the tumor had recurred. Erin underwent a third brain surgery on July 13, 2006 and she had stereotactic radiosurgery on July 26, 2006.
Erin's tumor has recurred four times since her original diagnosis... 7/05,7/06,11/06,4/07
