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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.

Tuesday, December 18, 2007


As Close to NED As You Can Get

The final report from the biopsy and the MIBG are "Minimal disease" and we really doubt there is any disease there at all. The liver biopsy was negative for any Neuroblastoma! The MIBG showed a faint light-up on Ryan's left collar bone, but it is hard for us all to believe that much larger spots cleared up, but not this small place. So, Ryan doesn't qualify for the ABT-751. We have a couple of options. We know we need to continue some kind of treatment even though there may be no disease present. For right now we are going to go with low dose VP-16, but may change in a couple of months after my surgery and radiation is finished. With VP-16 he will take one pill a day for 3 weeks and be off a week. The other option involved multiple pills every day, and we just feel something simple might be the best way to go for right now.
My surgery is scheduled for January 16th. I am thrilled to have it scheduled and look forward to getting it over with. Please pray that it will go smoothly with no complications. And while you're at it, please throw in a prayer that it won't hurt too much.
Thanks to everyone who has put ornaments on Ryan's Giving Tree. It is almost at 1000 ornaments. He loves checking on it. All of the money raised goes to Neuroblastoma research.
We have two more days of school before the Christmas break. Ryan has been enjoying the parties at school and all the Christmas activities. We hated to see Gramma and Grampa go home. We had a great visit with them. Thanks for all your prayers and messages of encouragement and hope. We feel very blessed to have so many thinking of us. Love, Les, Missy, Heidi, Will, and SuperRyan

Guest Book:
I am thrilled to hear the good news!!!!! Go Ryan!

Missy - I am glad to hear you have a surgery date and I will keep you in my prayers.
This is terrific news all around. My daughter took VP-16 for 19 months with no progression and very little difficulty. It was easy to do and easily tolerated. After 19 months we switched to oral cyclophosphamide, which is even easier and lighter than VP-16. I hope this works just as well for Ryan. Merry Christmas.


Erin took VP-16 for 19 rounds. She was neutrapenic only once, and I think that was less the chemo than that she flew on commercial airplanes twice within a couple of weeks and was exposed to a lot of unfamiliar germs. She required no transfusions, no hospitalizations, and grew her hair out. She remained stable the entire time she was taking it. We switched to cyclophosphomide for three main reasons: to stay a head of the tumor, so that it didn't become resistant to VP-16 (we can return to it if we need to); to take a break from VP-16 which over time can potentially cause secondary leukemia; cyclophophomide is supposed to be a incrementally better for counts.

You can read my comparison of the two at on the July 17, 2007 entry called Water, Water Everywhere.

Good luck to Ryan (and to you and your entire family)
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