- 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.
Monday, June 30, 2008
We are so glad he's home!
Friday, June 27, 2008
Big Smiles at Camp Sunshine!
I have had a sore neck and back ever since we got back from the beach so I am going for a massage with my friend, Karen,--thanks to Anna's Angel Fund. Anna and her mom are friends from Camp Sunshine. They sent me a gift certificate at Spa Sydell last year when I was diagnosed, but I haven't been able to go yet. Visit her site to read a great story about a teenage girl that faces many challenges from her brain tumor, but does such great things for others. I am going to think about them while I get a great massage today. Thank you, Anna!
I will update when I have more info about the upcoming surgery. Thanks for checking in and for praying for Ryan and all of us. Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, June 24, 2008
We got a special treat running into Jared and his mom and dad at the clinic today. They are friends of ours from the Lighthouse. Jared was in for his yearly checkup. They are such a great family.
After our appt. we hung out with Smith and Julie for awhile before heading down to the airport to pick up Les's mom. It is so great to finally be back home. That is all the news for today, enough for me! Please start saying prayers for Ryan and his doctors. Love, Les, Missy, Heidi, Will, and SuperRyan
Monday, June 23, 2008
ok, now you can take more good news from Sloan off your list!
urine HVA = 6 and VMA = 5 (both good)
This was great news to get. We have an appt. with Dr. George tomorrow at 1:15 to put together a plan. We'll let you know how that goes. Thanks so much!!!
Nausea--taken care of!
More Lighthouse Pics
These are just a few. You can see more pictures from our great week if you click on the link to the Lighthouse on the left hand column of our links. There is a link on the Lighthouse website to slide shows. Then click on retreat #4 (the most recent one). You can see just a bit of what goes on during a retreat. If you ever want to get involved with a great group of people, this is it. Your whole family can go on a retreat and volunteer. We met a young girl on this retreat named Tiffany who had seen a billboard about the Lighthouse and came knowing not a soul. She loved it and plans to bring her family back with her next time. We are so thankful to Melinda for her vision and her dedication and to all the volunteers who bring it all together and make it such a great experience. We love ya'll!!
Sunday, June 22, 2008
What a Beach !!
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
Sunday, June 15, 2008
NY wrap up
10 taxi cabs
16 vials of blood drawn
1 mibg scan
1 ct scan
4 bone and marrow aspirates
Think he's in a hurry to get back?
1 broadway show
2 toy stores
1 jet boat ride
3 loved ones to pick us up
and two happy boys to be home!!!!!
Happy Fathers Day
Saturday, June 14, 2008
They are finally home!
Friday, June 13, 2008
We are both finished!
The kids have to be in the pool at 8 am for warm-ups for their swim meet tomorrow. I am so glad we are hosting the meet here in town and don't have to travel. Tomorrow is the Pentathlon. Each swimmer has to swim all five events. It is usually a fast meet since there are no relays and no 6 & unders, and a lot fewer 8 & unders than usual. We are hoping to pick the guys up right afterwards. I'm sure we will be hanging close to home for Father's Day. Les will be able to put up his feet and relax! We will go and see my Dad for a while, too. We are heading for Rosemary Beach on Monday and so looking forward to it. It is going to be the break we have all been waiting for. Thanks for checking in on us and we will let you all know as soon as we know something. Love, Les, Missy, Heidi, Will, and SuperRyan
He is one mad kid!
Dr. Kramer is pretty much insisting on the whole brain radiation, so it looks like we'll have to do that first.
He loved the Lion King. Thank you, Christina. That was awesome. If I get any news today, I will post again. They are scheduled to fly home tomorrow at 10 "if there is no trouble with weather". Ryan also mentioned something about going back to FAO Schwarz today for a sword. :)
Love, Les, Missy, Heidi, Will, and SuperRyan
Thursday, June 12, 2008
He has had some fun!
When I talked to him last night he was bragging he had eaten snails. Yucch! He met Dr. Kramer yesterday. Ryan hates change-with a passion-so he wasn't real happy with Sloan. He refused to have his port accessed and instead opted for daily IVs. Who knows what is going on in his head. I'm betting he wished he could have taken Erika with him, and Dr. George. Dr. Kramer was wisely brief with him. Les said she was very upbeat and bubbly. My kind of girl!
They did all kinds of fun NY things yesterday: hailed a cab, went to the big FAO Schwartz, and took a boat tour around the Statue of Liberty. I think they are having lunch in Central Park today with Jon, the wonderful pilot who delivered them to Manhattan. They were finally able to meet Les' cousin, Christina, after their boat ride. I think they are seeing Lion King with her tonight. I am so thankful he has all these distractions. He is going to need them today and tomorrow. Les is looking into their flight home today. I hope they are able to come home tomorrow, but their last appt. is not until 4 and it is a scan that will last at least 45 minutes.
It is eerily quiet here at home. Heidi and Will are already at swim practice. I finished school yesterday and will be finished with radiation tomorrow. I have to go twice tomorrow, but know that I will be celebrating, if only in my head. We are all looking forward to the beach next week and seeing all our friends at the Lighthouse. It would be nice to have some good results to report. Please pray for that and for their safe return home, and for Ryan's patience and understanding the next couple of days. Thank ya'll so much for supporting us and loving us. We feel it and it lifts us up everyday. Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, June 10, 2008
"Can I drive?"
Saturday, June 07, 2008
Friday, June 06, 2008
Start spreadin the news...
Tuesday, June 03, 2008
Three More Days of School!!!
Ryan swam in our first swim meet on Saturday. All three of the kids swam very well and got many ribbons. He has done better and better at practice. Tonight he practiced with the big kids, and I know he felt like such a big kid practicing flip-turns. We have another meet Thursday night in Jefferson. I will try and get a few pictures to post.
Friday is our last day of school-finally!! We are the only county still in school and all the kids (not just ours) are getting a little antsy. So are a few teachers I know!
A good friend of ours could use your prayers. Please say a prayer for little Luke Webb. He is having scans tomorrow and we want to see improvement after his second MIBG treatment. Please also ask for strength for his mommy. She is doing this by herself and has been doing an incredible job, but I know her fears all too well. I can' t imagine having to take care of Ryan alone. I'm not sure I would have the strength for that. Thanks for checking in on Ryan. Please keep praying for his happiness and good health. Love, Les, Missy, Heidi, Will, and SuperRyan