Super Ryan

We had a wonderful weekend. It was so great to get Ryan back home. We had some friends over Saturday night for a campfire and smores-and a few fireworks. It was a blast-literally. We had intended on going to the waterslides at Lake Lanier on Sunday, but stayed home after seeing the weatherman forecast rain-which didn't come until late, but when it finally got here, we got a good downpour. We pushed those plans off until Thursday. We got a call today from Dr. Reissner's office and have an appt. tomorrow at 10:30. We will stop by the clinic beforehand to get labs and see where Ryan's platelets are. We'll post when we know something. Still no word on his marrows. Thanks for checking in. Love, Les, Missy, Heidi, Will, and SuperRyan

We don't have any more info to share on the medical front. We still haven't heard on his marrows and we don't have dates for anything coming up. I guess we will be hearing in a little while about his platelet count. We have sure missed him this week while he has been at camp. We have looked everyday for pics of him on the camp website, and finally found some yesterday. There was a picture of him from Wednesday with a major pie in the face, and one from Thursday of him dancing with one of the female counselors. He had big smiles in both, and that's what counts. We are certainly excited about picking him up tomorrow morning. We aren't too sure of what the weekend holds, but it will be fun!
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

We met with Dr. George today. The plan is to go in and remove what is left of that spot we gamma knifed. They will recheck his platelets on Friday-they have to reach 100k before he can have surgery. I am guessing it will be the end of next week. After he recovers from that, we will go ahead with the radiation-10 days, I think. Then sometime after that, we will go back to NY for the antibodies. It all sounds so simple, but I so dread telling Ryan about it. At least I have a few days to prepare, he is still at camp.
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

God is hearing our prayers! We heard from our wonderful nurse, Erika, that she got reports today and on the cover sheet it says BM aspriate to follow, however the Biopsy reads no evidence of neuroblastoma!!!!
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!!!

Well, you can take the nausea prayer off your list. Ryan won't be getting his chemo at camp this week. I'm sure he is happy about that. They checked his counts this morning and his platelet count is only around 35k, and needs to be about double that for chemo. It has been very quiet around here today. I took the opportunity to go through all the papers on my desk-stacks and stacks of insurance papers, checking acct. statements, all those things you are smart to stay on top of! Thanks for your many prayers and thanks for checking in! Love, Les, Missy, Heidi, Will, and SuperRyan

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!!

Ryan finished up all his tests this afternoon and I had my last radiation treatment. Yahoo!!!!!!!!!!! We are all missing Ryan and his Daddy very much. Hopefully, the weather will cooperate tomorrow for smooth flights. They don't expect to be home until around 4:00, but they are flying into Winder, so that is really nice. There was a little mix-up this morning with his CT scan. He drank all the contrast, but the tech told them they were missing some of Ryan's bloodwork. I don't know how that was possible when they took 12 vials of blood on Wednesday. They went on to the bone marrow aspirates (back drills, as Ryan calls them!), and then went back and did the CT afterwards. The pain medicine they gave him worked great, but he was hurting again this evening. We still don't know any results, and I'm guessing with it being Friday, we won't learn anything until next week.

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 so mad. He threatened to call the cops if Dr. Kramer tried to treat him! He says he is never going back. This is going to be really tough. Yesterday was really hard. When I talked to him this morning, he was walking to Sloan drinking his contrast. We didn't get any results of the MIBG yesterday. Les said he did great with the spine MRI. I know they had a great lunch with their new friend, Jon. I heard something about him winning $4 in a guessing game. They had to go back to Sloan after lunch and Ryan told his dad that he could go back, but just to give him cab fare and he was going to find Christina and have some fun. I can just see him ordering everyone around in NY.
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

Ryan's easiest days in NY are done. Today will be a little tougher and tomorrow even tougher. His MIBG scan is this morning at 9:30. Please pray for a clear scan. He hasn't had one of these since December. After the scan he will be free until 5:00 when he has the MRI of the spine. I don't know if their machines are any different, but the spine MRI is a toughie. He has to lie motionless for about 45 minutes. Last time he had big crocodile tears the last few minutes and wanted to just stop.

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

Les and Ryan made it safely to New York today. They left from the Gwinnett Airport on a little plane that seated 8-10 for Roanoke, VA. They changed planes there onto a plane that seated 4 and flew to Manhattan. I don't know anything about planes, and I'm sure the boys could tell you all about them. I just know from Ryan that they were "cool!". They are snuggled into the Ronald McDonald House for the night. Tomorrow they go through admissions, meet Dr. Kramer, and have the MIBG injection. On Thur. and Fri. they will do MRIs of brain and spine (even though he just had them at Scottish), CT (I'm guessing the usual chest, abdomen, pelvis), MIBG scan, and bone marrow aspirates. I hate that he has to endure all of this all at one time, but at least it will be done and there are lots of distractions. Les' cousin Christine is taking them to see the Lion King on Thursday night. I am so glad he has that to look forward to. Thank you Christine, Ken, and John for all you did for my guys today! Please pray for good scan results and a safe trip back home. Love, Les, Missy, Heidi, Will, and SuperRyan

A couple exciting things happened today. Ryan came with me tonight to get gas and decided to do something he had never done before, make a call from a payphone! Did you know is now costs .50 cents to make a 10 minute call !! I guess that's not bad if you compare it to his cell phone bill. We finally have an appointment at Sloan in New York. It will be Wednesday and Thursday next week. We will get all the registration out of the way, initial exam then hopefully MRI and bone marrow aspirates? That would be great if we could get all of that accomplished before leaving on Friday. We plan on coming back home to go to the beach for a week then Ryan will head to camp for a week. Then plan to get back to Sloan to start the procedure. There will just be two, 10 days or so for each one separated by a four week break. My cousin Christina lives in Manhattan. It will be nice to catch up with her. She will bring a lot of "city savvy" and good advice to us. We have another swim meet first thing in the morning. The kids are all doing fantastic this year. We'll keep you posted next week on Ryan's progress. Love Les, Missy, Heidi, Will and SuperRyan