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Location: Athens, Ga, United States

Our son Ryan was diagnosed with stage 4 Neuroblastoma in 2004. In 2007, my wife Missy was diagnosed with stage 2 triple negative breast cancer. On July 8th, 2009, Missy lost her battle to this horrible disease. 2 days later, on July 10th, Ryan also lost his. Together forever, they both watch over our family now from the heavens above. Below is our families journey through Ryan's treatments, along with the joy and laughter we tried to instill into our daily lives. Those days helped us all cope with the pain and suffering that comes with cancer and it's deadly treatments. Both Missy and Ryan endured high doses of chemo, radiation and surgeries. Over 150 nights spent in the hospital and many, many more days. More transfusions than I could count. Yet both Missy and Ryan took on each day with a positive attitude and warm smile for all their friends. We miss them terribly. They will always be a shining light in our lives.

Saturday, May 02, 2009

 

Headed to Vermont !







We will know on Monday if we can begin a phase 2 trial in Vermont on Wednesday that utilizes Nifurtimox with a couple of chemo agents that Ryan has had in the past. Nifurtimox has been shown to lessen the side effects of chemo while at the same time enhance its effectiveness. The reason Ryan is eligible is that he has extensive neuroblastoma in his marrow and skeletal. (eligibility requirement #5). This Wednesday, he will do a MIBG/CT scan and bone marrow aspirates to verify. The study has us in Vermont Wednesdays though Sundays every 3-5 weeks for 5 treatments. Their will be no adverse side effects to this treatment so at worst, this will greatly lessen his pain, at best, it's possible to clear him once again. I have explained that these trips are to help replace the pain killers he is on, 24/7. Morphine, Fentanyl and Trilisate. All individually are for moderate to severe pain. He is on all three at the same time. I hate it.
Ryan had his garage sale today. He has been working on it for a month. You can see him washing Will's bike to get it ready for sale. He was raising money to get more airsoft weaponry for himself and Will. I offered to buy it all many times but he absolutely refuses. He wanted to make the money himself. He had many friends come by and pay prices that are not normally seen at your typical garage sale, if you know what I mean!! I will post a couple pics later. Thanks to Pat and Steve for your generous help! Ms. Wheeler, Gloria, Ryan's good buddy Matt and his family, Rick and Barre, Pat, Jill, Carla for making him very happy for all the effort he has put into it, all by himself. The other picture is of Will, and his entourage last night at the eighth grade dance. Seriously, he will really with Morgan. They had a great time. Thank you all again, and pray for great results in Vermont. Les, Missy, Heidi, Will and SuperRyan

# posted by Ryan @ 5/02/2009 02:55:00 PM
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