- Name: Ryan
- 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.
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Sunday, October 14, 2007
Hey Will, 2 minutes for looking so good!
Cure and the Atlanta Thrashers invited Ryan and some of his friends to last night's game against the NJ Devils. Will got to spend a little time in the penalty box (hmm, just like home) before the game and got a few close up shots of the Thrashers. The president of the Hawks and Thrashers, Bernard (Bernie) Mullin, escorted Ryan and Tyler out to center ice for the official puck drop. He even gave Ryan his Thrashers management scarf. You can see Ryan playing to the crowd. I wish they had given him a mic. That would have been fun. Chris Alain called to let me know he had seen Ryan on TV !! A lot of us old fans would have loved to do this when we were his age. We actually started the evening with a little street hockey game an CNN before heading to the reserved suite at Phillips Arena. It was game on for my two Boys! Two injured Thrashers came up to the suite to sign autographs, hand out souvenirs, and pose for photographs. Robin with the team and Kristin with Cure did a fantastic job setting it all up for the kids. They all had such a great time. Many thanks also to my good friend Smith for helping me keep the kids corralled!
On the treatment side we are slowly narrowing down the next direction. We have eliminated Nifurtimox because it is used in conjunction with the chemo he is already on, and we know that neuroblastoma cells eventually become immune to chemo. We are leaning heavily to the ABT-751 Stage II trail. This drug works in different ways and is designed to stop the growth of tumor cells, either by killing the cells or by stopping them from dividing. He would receive oral ABT-751 once daily on days 1-7. Treatment repeats every 21 days for 52 courses. I wish there was a standard relapse protocol that worked because the pressure to wade through all this medical terminology while balancing our child's life, along with quality of life, weighs very heavy on us. We will do round 8 of chemo starting on Monday and have another MIBG scheduled to see exactly how much disease is still imagable. We are thankful to have all our supporters. Love, Les , Missy, Heidi, Will and SuperRyan.