- 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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Wednesday, January 28, 2009
Here are a couple pics of Will and Ryan playing with dry ice. It packed our yummy dinner that arrived today from our friends, Carrie and Tom Pinotti. Thank ya'll so much! They boys are already asking when we can get some more! Will's team won their basketball game last night. I think the season is winding down pretty soon. I love basketball season cause game's are never canceled, the season doesn't drag on with make-up games, and all the games are indoors! Soccer has already started. Heidi has been going to conditioning since the first of December. Try-outs were finally last week. Heidi will be playing Varsity for her school, and Will made it to the last day of try-outs and they cut him at the end of the day. I'm proud of him for going and giving it his best. He was pretty disappointed, but he'll make it next year. He's already signed up for rec soccer, and that is where the fun is! Thanks for checking in on us and for your many prayers. Love, Les, Missy, Heidi, Will, and SuperRyan
Friday, January 23, 2009
I can take a deep breath.
Les talked to Dr. Rapkin this afternoon and the word is his MRI's looked good. I felt they would be, but there is always that doubt. That terrible, terrible doubt! These results will be added to his treatment history and all of that will be sent to St. Judes to see about the 3f8 clinical trial there. We need to do something to try and protect the rest of his body. If only it worked like the intrathecal antibodies do. Ryan asked me this morning if I thought he would ever get his port out. He really wants his Ommaya port out, and I really don't know why he can't have it removed. You really can't see it with his hair having grown in, but we both know it's there. Tomorrow night he is spending the night at the Atlanta Zoo with Camp Sunshine. I'm glad it has warmed up a bit. He won't be sleeping outside, but they will be walking around outside looking at the animals. Heidi is off to a girlfriend's sleep over. It's her sweet 16. I can't believe our girl will be 16 next month. She's doing a great job driving. After sitting at the soccer field for an hour today waiting for her to finish, I am ready for her to start driving herself. Will has a basketball game tomorrow. His team is doing pretty good. I think they've only lost one game and that team was really tall! Well, thanks for checking in on us and thanks for your many prayers for Ryan. Please pray for a cure for all cancers soon. Love, Les, Missy, Heidi, Will, and SuperRyan
Wednesday, January 21, 2009
Today was pretty tough. We headed out at 6am, 18 degrees. This is the first time he has had to do both MRIs back to back. He watched "The Simpson's" during both MRIs which was a nice distraction. He tried really hard, as usual, but he needed a little break three quarters of the way though. His neck began hurting really bad. We also had his labs drawn. We should hear results tomorrow. These test results, along with others will be sent to Sloan to wrap up that trial and then their findings with Scottish Rite and Egleston reports, will go to St. Judes in Memphis to start down the next possible path of humanized antibodies to help protect the rest of his body. He spent the rest of the afternoon at my office, working. We brought a play station to keep him busy. That along with snacks and root beers! who would want to go home? Thanks for your many prayers for our tough guy. He is an unstoppable trooper who continually amazes us. Les, Missy, Heidi, Will and SuperRyan
Tuesday, January 20, 2009
Tomorrow are Ryan's brain and spine MRIs. Please say prayers that they continue to be clear. and, please pray that Ryan will have an easy time of it. We're gonna rent a movie to hopefully keep him focused on something other than the banging and clanging of the MRI. He had a good weekend. Les took the kids and Ryan's buddys Matt and Rick to the Gladiators game. They swung by Hooters to see the new magazine with Ryan's pics in it. They brought home several copies. Ryan was his usual celebrity self at Hooters. Some of the same girls that were at his party were there and came by to sign his book and say hey. He was pretty happy about that. Yesterday we all had dentist appts. We all got good check-ups except Ryan's gums seem inflamed. I'm sure that's the Accutane. He's only got tonight and tomorrow morning doses left! Thanks for your many prayers for Ryan and all of us. Love, Les, Missy, Heidi, Will, and SuperRyan
Friday, January 16, 2009
Brrr! We are freezing our hineys off. Not Ryan, though, cause he's half-Canadian! Ryan is doing good. I wish he were at school, though. He is so far behind. He has a teacher that comes out twice a week, but there is just so much to cover. Until his ANC comes up he's just gonna have to be behind. I don't need him or me sick. I say that as I'm thinking about going back to work! We met Dad yesterday after work for a movie. "Bedtime Stories" was my kind of movie! No guns, no half-naked girls, no bad language. A great family flick! I definitely recommend it. We're planning on taking in a Gladiators game this weekend to benefit CURE. Will and Ryan love that! Have an awesome weekend. Stay warm. Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, January 13, 2009
A wing and a prayer
We've got a week of Accutane down. His sweet little face is peeling and his lips are dry and cracked. Another whole week to go! We got an email from our friend, Tonya. Pictures of Ryan's birthday party at Hooters is in the new magazine available at any Hooters. We'll be checking that out soon. Be sure and get your copy so Ryan can autograph it! It is sure to become a collectors edition !! Next week Ryan will have a couple of MRI's to close out the study in New York. We are hoping that these will also suffice if we get accepted in the St. Jude, Memphis antibody study. See ya at Hootsky's !Les, Missy, Heidi, Will and SuperRyan
Thursday, January 08, 2009
Honey and Cinnamon When Mommy Feels Bad
That was on my list of "favorites" this morning by Ryan. He is so thoughtful- just like his Daddy. He is SO like Les sometimes I call him Les Jr. He loves that! Ryan's teacher is coming back today. We're just going to hang close to home. It has turned cold again. Have an awesome day! Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, January 06, 2009
Perfect, that's him!
Dr. George thought Ryan looked "Perfect" today. I loved hearing that. He hadn't gained any weight to speak of, but I think he was a little taller. His platelet count has gone up to 48,000 so that was good news, but his hgb. was only 8.2 and his wbc was something like 1.5, Dr. G. thought he might be fighting something. Les and Heidi have both had colds so that is very likely. We've got to get counts rechecked in two weeks. He got his IV dose of zometa, and we picked up new scripts for the Accutane. I thought he had another week off, but after checking the calendar, he doesn't. The two weeks off the Accutane goes by so fast. My friend, Angie, dropped off some Arbonne lip protection for him, so we'll get to try it out before I thought. Thanks, Angie! Ryan's teacher comes in the morning and I have chemo at 1:30. thanks for checking in on us. Please keep praying for our sweet boy. and please pray for our friends Jackson, Joshua, and Patrick, and for their mommys and daddys. Please pray for a cure for all cancers. Love, Les, Missy, Heidi, Will, and SuperRyan
Thursday, January 01, 2009
Happy New Years !
If you click on the pictures, it will enlarge so you can see the beautiful pictures that Lynn Crow took. We are going to enjoy them forever! Thank you so much, Lynn and Isaac! The picture below is Ryan and his buddy, Rick. Rick is Morgan (Will's friend) and Ansley's (Heidi's friend) dad. We spent New Years eve at their house chaperoning Ansley's party. I fell asleep, but woke up before midnight. Fortunately, Heidi's friends don't need a lot of chaperoning. They're a great group of kids. Ryan went down to Matt's on Tuesday and spent the night. Matt's mom took them bowling and to play games at Stars and Strikes. Ryan had a great time and won 1000 tickets on one game! Thanks, Christy! He wanted to go play with his buddy, Max, today, but was just so tired. His tummy hurt a little and he felt nauseated, but nothing a little medicine couldn't fix. It was a good thing he stayed home, though. Maybe he can go play with Max another day. Thanks for checking in on us. Happy New Year! Love, Les, Missy, Heidi, Will, and SuperRyan