^^Angel^^ Ryan B. - Quilt Finished in 2005
Born: June 29, 2000 Passed: July 10, 2005
Illness: Infiltrating Pontine Glioma (Inoperable Brain Stem Tumor)
A Thank you from Ryan's Family!
Written June 1, 2005
I wanted to thank you and all of the stitchers for doing this wonderful quilt for Ryan. He absolutely loves it and covers up with it every chance he has, he tells us that it makes him feel warm inside. He says it feels like he is getting a million hugs all at once. He snuggled up in it the moment he got it out of the box. He keeps it on his bed to sleep with at night. I would like for you to put his website address on your site, just so everyone can stop by to visit.
www.caringbridge.org/ky/ryanbrown
Love and Prayers,
Andrea, Ryan's mom
Ryan B.'s Story
written by mom Andrea
Ryan was born on June 29, 2000 at 4:52 p.m. He was 9 lbs. 3 oz. and 20 1/4 inches long. He was a typical baby and toddler, did everything on time or a bit early. The only thing that was delayed was his speech. It wasn't a big concern for us because some of the family has speech problems. Ryan moved to Kentucky with his daddy and I, of course, when we were stationed here. He was not all to happy about the move. Ryan had to leave everything he knew and move 6 hours away.
Moving to Kentucky is where the story really begins as far as the cancer. Ryan started to have headaches about once a month for just a few months, then right after christmas they became more frequent, once a week. It was around the time Phillip came home from Iraq that the headaches became even more frequent and more severe. He would have a headache, it seemed like once a day. They made him irritable, nausea/vomit, drool, wouldn't eat or drink. We had to keep the lights off and the noise level very low. We had taken him to the doctor over and over again, it was always something different.
Finally, the headaches became so severe that we decided to go straight to the ER in Nashville. They did a head CT, found a mass, and then did a MRI the next day and was diagnosed with an infiltrating pontine glioma, with an exaphytic sitting on his pituatary gland.
We began 30 rounds of radiation treatment on April 8, 2004 and those were ended on May 19, 2004. The first MRI after radiation showed a better than expected result, the tumor shrank. He then started Temodor on July 4, 2004. Ryan had an MRI in August 2004 and it was stable from June. We continued with the treatments as planned. It was November 2004 for the next MRI and it showed more tumor shrinkage. It was more than we could have hoped for with this cancer. Ryan still continued treatment and February 2005 the MRI showed a slight growth, disease progression. The temodor was ended after the last MRI, and we are starting a Phase II trial study called Zarnestra. Ryan is also on an alternative medicine called Protocel. We are praying everyday this combination is the key to beating this tumor.
Ryan is in really good spirits and has been throughout this journey. He is a wonderful child that has endured more in his life than anyone should ever have too. He is brave and very strong. He is my HERO!
Written by Ryan's mom Andrea
