- 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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Monday, December 24, 2007
Merry Christmas To All of You!
Our house is full of excitement today. The kids are all ready for Santa and hoping he thinks they have been good. For the most part, they have been good, very good. Les and I have already gotten the best present we could have hoped for with Ryan's test results. Our only other desire would be a cure for Ryan and all our friends. Ryan's giving tree will donate over $5300 (s0 far) to help make that a reality. Thank you to:
Sarah And Walt Bailey
Randy Sherry Taylor Caylee Mayci Miller
Mark & Hannah Smith
Nanny And Grandaddy Bailey
Jsp Childrens Foundation Smith And Julie Peck
Gramma & Grampa Morgan
The Robitscher Family
Brenda & Bobby Hunter
Buddy & Carolyn Smith
We also want to thank everyone who has been so kind and sent cards, gifts, food, and well wishes to the house. I hope that I either sent a thank-you note or an e-mail or made a phone call. Please forgive me if I overlooked anyone. You can imagine how crazy things have been around here lately. Except for the fatigue, I feel pretty well. Ryan shows no sign of fatigue-he is going 90 mph. He starts his VP-16 today. Please say a prayer that he won't feel any side effects (especially for the next couple of days). We hope that ya'll have a Merry, Merry Christmas filled with much joy and peace. Enjoy the time with your family and friends. Cherish every minute! We are off to lunch at Outback (Thank you Haymon-Morris Middle School!) and a movie. Love, Les, Missy, Heidi, Will, and SuperRyan
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
Saturday, December 15, 2007
Happy, Happy Weekend!
Just a quick update-we don't have any results yet. We did get his catecholomines back and they are both in the normal range-hooray!!! Ryan had his MIBG injection on Tuesday and scan on Wednesday. The liver biopsy was Thursday morning. We were a little surprised (to say the least) when they told us he would have to lie still for 6 hours after he woke up. With good behavior (surprise!) we were able to cut that to 5 so we could head to my appt at Crawford Long. I really didn't learn anything and don't have surgery scheduled :( The Radiologist that did the liver biopsy did say that Ryan's gall bladder doesn't sit in the normal spot and that could be what we're seeing on the MIBG. Not that cancer could be in his gall bladder instead, but that the gall bladder excretes the radio-isotopes naturally. Ryan was in a lot of pain Thursday and early Friday, but started feeling better around lunchtime on Friday. I do want to thank our friend, Hannah who works for the CHOA Foundation raising the dollars it takes to keep the hospital running and beautiful. I ran into her in the lobby and she brought Ryan a fabulous gift to keep him distracted, busy, and very happy. That is exactly how I would like to spend my weekend. We took Les' parents to the Gladiators game last night, and Heidi has a basketball game this afternoon. We have sure been enjoying the 70 degree weather, but will likely be staying in as the temperatures drop this weekend. Thank you so much for your prayers and kind words of support. We have felt very uplifted during all this stress. Enjoy your weekend. Love, Les, Missy, Heidi, Will, and SuperRyan
Wednesday, December 12, 2007
Just got a call from Les and he said the scan looked good. The only light-up he saw was the usual liver. Tomorrow morning we will (hopefully) find out just what that is. They will biopsy 3-6 spots and then we will know if Ryan still has cancer or not. Of course, that is unless there is something Les can't see. The radiologists go over that much closer than just the naked eye. We are celebrating tonight by going to see the lights at Lake Lanier. Thank you all for your prayers for Ryan. God answered two prayers for me today. My Dad got a good report from his doctor, too! I finished my chemo on Sunday night and feel better everyday. I am hoping to schedule my surgery tomorrow when I see the plastic surgeon. We will update again when we get results from Ryan's biopsy. Love, Les, Missy, Heidi, Will, and SuperRyan
Wednesday, December 05, 2007
Lots to do
We sat down with Dr. George yesterday to discuss the requirements for starting ABT-751. Ryan will need to under go MIBG and CT scans, Echo, Liver biopsy or maybe partial resection where it has been lighting up the MIBG scan for ever, bone and marrow biopsy, lots more blood work and likely another round of chemo. There sooo are many hoops to jump through to begin a trial and it all has to happen in a very tight time frame. Then there is also the possibility that Neuroblastoma will not show up at all in any test after these last 11 rounds of chemo and Ryan will be declared NED ! That would be the greatest Christmas present we could receive, it's number one on our list. Either way it goes, it's still scary. The kids are so excited about their Grandma and Grandpa flying in next Monday, they can hardly wait. I guess they'll get to hang at Scottish during the days while Ryan tests. It's going to be busy! Happy holidays, Les, Missy, Heidi, Will and SuperRyan.