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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.

Sunday, June 22, 2008

 

What a Beach !!






Good times were had at Rose Mary Beach, Fl. Thank you Melinda, Catie, the Peck family, the Howard family, and so many more at the Lighthouse. Our family partners this time were Ryan and Sarah Howard Fetz. They were so good to us. It was a wonderful week spent relaxing and having fun, not just with our little family, but also with those we consider part of our family. It was great to be reminded that so many care about us and say prayers for us all the time. We missed Maddie (you better be there next time, girl), and it wasn't the same without Taylor and the rest of the Millers. We met eight other great families. On our first retreat in 2005 most of the families were from Atlanta, but the word of the Lighthouse is spreading across the country and there are more people coming from different states. We shared a house with a family from Minnesota that had 3 kids about the same ages as ours. Their son, Mitchell, is on treatment for leukemia and will be added to our prayer list. You could tell he looks up to his big brother, Sam, much the same way Ryan does to Will. Heidi had a great time getting to know his big sister, Olivia. Another family from Wisconsin was able to tell us about their experiences in NY. Their daughter, Avery got the 3F8 intrathecally at Sloan last year.

Oh yea, I guess I should mention that we talked to Dr. Kramer during the week. What we know is that the spine MRI is still clear. The brain MRI showed about a 30% shrinkage. We don't have results from the 12 hour urine collection or bone marrows yet. There were some light-ups on the MIBG in his abdomen that she thought might be lymph nodes, but she doesn't have the info on his liver, so we don't really know what that is yet. We have requested all the results be sent to Dr. George, so we hope to sit down with him this week and learn more. It looks like there are a few extra steps before we go back to NY for the antibody therapy. We are hoping to be able to do these in Atlanta and will let you know more about that after we make some more decisions.

We took Ryan to Camp Sunshine this afternoon. He took the news that he was going to get chemo at camp this week very well. They will access and de-access him each night so he can play and swim like always. He is geared up for a great week. We are planning some individual time with Heidi and Will this week. Les's mom arrives on Tuesday, and we are all looking forward to that. She is still running the heater at her house on Vancouver Island, so it will be a big adjustment for her dealing with our 90+ degree heat. I have a list of prayer requests for this week: a great, fun week for Ryan with no nausea; a safe journey for Les's mom; more good news from Sloan; we're able to come up with a good plan with Ryan's doctors; a pain-free week for Luke Webb and courage and strength for his mom, Carrie. Thanks so much for checking in on us and for your prayers for all of us. Love, Les, Missy, Heidi, Will, and SuperRyan

# posted by Ryan @ 6/22/2008 07:22:00 PM
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