Super Ryan

Ryan's counts were not better yesterday at the clinic. Les had nightmares trying to fill the script for Accutane. He has to drive back down to the clinic today to get a new handwritten prescription. Please pray specifically this week for Ryan's counts to go up. If they don't show an upward turn, they will do bone marrow aspirates to see if anything else is going on. New York just keeps getting further away. Praying hard they make a jump, Les, Missy, Heidi, Will and SuperRyan.

Asking today for prayers for Max's family. He passed away suddenly last night.

Thanks, Karen for the pictures below from Camp. Ryan is going back to the clinic on Tuesday to have his port flushed and for another set of blood counts. The plan right now is to start accutane, fondly referred to by us and a few others as craputane. When his platelets reach the magic number, we will head to Sloan.

I have a very long overdue huge thank you to the teachers and staff at Bethlehem School, and to Matt's mom and dad. Over $700 was raised at school in a single day back in the spring. Ryan's best buddy, Matt's mom and dad matched it. I sent it all in to CURE and filled out an application at Walmart to have them match the donation. I have waited and waited, and quite frankly, I'm over it. Who knows? Maybe they just send the donation directly to CURE, but I'm done. And so- thank you to everyone at school and to Scott and Christy for your generosity. Thank ya'll for caring so much for Ryan and for wanting to help find a cure.

Ryan is feeling good today. Thanks for checking in and for your prayers. Love, Les, Missy, Heidi, Will, and SuperRyan

This morning Ryan lost 90% of his hair, the last 10 we hit with the razor. He took the new look with a grain of salt and went on with his day. It seems harder for us to accept! His ability to cope with treatments and side effects, for so long, is just unbelievable. We are so lucky to have him remind us everyday, whats important and true strength is not just lifting weights. Three cheers for Ryan !! We love you.

Ryan has three more days of radiation left, 3 too many as far as I'm concerned. This evening after his shower he was sitting in my lap. He slowly pulled his fingers through his hair and showed me several strands. "Oh no" he said. We are hoping that he won't loose all of it. He is not aware of the new surgical scars on his head and we were really hoping to avoid that stress or any others for him all together. School starts on Friday and we want him to be happy and excited about going. There is never a good time for any side effect. I just HATE all the treatment that saves his life :( Our hearts are so heavy watching the tremendous load he carries.
He did take time out of his busy schedule today to hand out gifts of appreciation to large contributors of "The Lighthouse" at a golf benefit at the Saint Ives Country Club with founder and a good friend of his, Melinda. Keep praying for his strength to endure.
Les, Missy, Heidi, Will and SuperRyan

Tomorrow will be Day 6 of radiation. Ryan will be half-way finished. He had fun on Monday's visit. My friend, Karen, and her son Jackson went with us. Ryan had fun showing Jackson around the Winship. They brought us sausage biscuits from the vending machines. Yummy!! I tried telling him that meat and vending machines are not a good mix. He threw up before we got home, but felt better after he got sick. We have been giving him Zofran before his treatment since then.
No real news from my doc. She thought I looked great and was happy to finally get to meet Ryan. I go back to see her in 3 months.
We had to be at Scottish Rite this morning at 7:30 for an 8:00 CT to check the ommaya port and make sure it works properly. Everything went smoothly and it seems to be working like it is supposed to. We are hoping that by doing the test here a) if there were a problem, Dr. Reisner could take care of it, and b) that we won't have to do it in NY and might make our stay in NY a day or two shorter.
Dixie got a good check-up at the vet yesterday. She weighed 4 pounds! She is such a cutie and we are all loving her lots. Thanks for checking in on Ryan. Please keep him in your prayers. Love, Les, Missy, Heidi, Will, and SuperRyan

SpyGear found out, somehow,
just how much Ryan loves their stuff. Kim Bratcher from SpyGear in California, contacted us and was so unbelievably nice to send out some of their hottest items. Ryan was ear to ear hooking it up. Last night he had the video car in the den, watching TV after he went to bed. (gonna have to keep an eye on that thing!)



We hung out at the pool most of the weekend. Just can't image he had brain surgery such a short time ago.

I did it! I de-accessed him without any trouble. I was WAY more anxious about it than him. So chemo is over for this week. He had a little nausea each day, but it seemed short lasting. Dr. Reisner gave him the go ahead to swim so I am certain he will be in the pool later today. We didn't have radiation today. They are updating their software. He hasn't had any more headaches, so that is great! Hopefully, he won't have anymore. He has been asking if he can do the things he hasn't been able to since April-like jumping on the trampoline, jumping on his pogo-stick, and heading a soccer ball. We gave him the go ahead on everything except the soccer ball!
He has an interview today with someone from WSB Radio for the upcoming Care-A-Thon that raises tons of money for Aflac at CHOA, and then we are hoping to pick up some back to school stuff.
I go back to see my oncologist Monday just before Ryan's radiation. Luckily, they are in the same building, so that helps. I have one week of summer vacation left before I have to go back to work. The kids start on the 15th. I dread it SO much!!! Back to homework and bedtimes. Yucch! Yucch! Yucch!
Thanks for checking in on us and for your prayers for Ryan. Please continue to pray for him to feel good and for his cancer to never come back. Please also pray for all the kids on and off treatment and for a cure for all cancer. Love, Les, Missy, Heidi, Will, and SuperRyan

Chemo started on Monday and radiation began today. The treatment today lasted longer than it will take on next 11. Ryan had a pretty good head-ache this evening. We have been worrying about potential side effects and are praying that this is as bad as it gets.

We meet with Dr. Riesner tomorrow after radiation. He is going to test Ryan's ommaya port to make sure it is functioning correctly for NY. I am not sure how we're going to react to the test, let alone Ryan. It makes my stomach queasy thinking about it. He is hoping to get the go ahead to swim, after his port is de-accessed on Friday, of course. The Tylenol has kicked in and he is playing with the spy-gear room alarms he bought today with some of his birthday money. Thanks so much for checking in on us and for your many prayers for Ryan. Love, Les, Missy, Heidi, Will, and SuperRyan

Here is a picture of our little friend, Adalynn. She is just adorable. Her mom is Ryan's 3rd grade teacher. They are getting ready to move to PA, and we are going to miss them terribly. There is also a picture from yesterday of Ryan and our wonderful Dr. George. You might have seen his picture in Sunday's AJC. There was a very moving article about Tyler Copely. Tyler dropped the puck with Ryan last year at one of the Thrasher's games. Les took some pictures of Ryan with his mask, but I can't figure out how to post them. We'll get one up later. Things went well at Emory. We were initially thrown a curve with more radiation treatments than we had planned and the possibility of getting them twice a day (which would mean staying in Atlanta all day for a couple of weeks), but after Dr. Nadia consulted with the radiation oncologist in NY, we got it all settled to 12 treatments starting next Monday. They won't do a boost to the tumor site since he already had the gamma knife, but they will do radiation to his spine. Of course, we don't want to do anymore than we have to because of the potential side effects, but we want to be as aggressive as we can. It is a hard balance to achieve. We did a little shopping inbetween appts and picked up an American Idol video game.
We had a good visit to the clinic. Ryan's hgb. and white blood counts were really good. His platelets are still low at 66k, but high enough for chemo next week. We will do another round of irinotecan and temodar with the radiation. Please say prayers that he won't be sick. He has to be off chemo three weeks before we can start the antibodies in NY, so if everything goes as planned we could be back there the third week in August.
We are getting ready for his birthday weekend. We'll post pictures of that and hopefully of Heidi and Will picking up some medals at the state meet.
Thanks for keeping us in your prayers. Love, Les, Missy, Heidi, Will, and SuperRyan

Tonight on 60 minutes there is a story on a little girl, Olivia, who is fighting NB. It should be very interesting.
The Conquer Childhood Cancer Act has now passed in the House and in the Senate, and is headed to the Oval Office for Bush's signature. I hope they find the $$ to finance it.

Ryan is still doing great. We have appts. on Tuesday with Dr. George and at the Winship to make his mask. He stayed with Matt yesterday instead of going to the swim meet. It was such a long day. We had to be there at 12:15, and Will swam his first event around 4:00. He swam an all-star time in long free and finished first in breast stroke. He was pretty happy about that and didn't even get mad when he got disqualified on his flip turn in the backstroke. His birthday party is later today. A photographer is coming around 4 today to take pictures of us for Woman's World magazine. Watch for the Sept. edition to see if any of our pics make it. They are doing a story on Ryan's friend, Jena.

One of our friends from family camp earned his angel wings this past week. Dustin Cobb was an amazing little boy who fought hard for a very long time. We were very saddened to hear about his passing. He doesn't live too far from us and was getting a new treatment in VT that seems to hold a lot of promise. His family could use your prayers and some caring words.

Thanks for checking in on us and for your many prayers for Ryan. Love, Les, Missy, Heidi, Will, and SuperRyan

Ryan has been feeling great. He hasn't really slowed down. We are still shampooing twice daily and putting the antibiotic cream on his incision sites. It looks good to me, but I am no doctor. We got an email from Erika that Dr. Reisner gave the ok for Ryan to go ahead with radiation a week early. I just don't know that we can get everything ready in time though. He has to go to Emory to have the mask prepared and they have to have time to plan his treatment. And- we have to order his chemo. We will probably just leave it as is since we are doing his birthday party next Thursday night and going to Tifton next weekend. He got a cap in the mail yesterday from our new friends, the Rice family. We shared a house with them at the Lighthouse. If you make your mouth really small and stretch out the "o" you might sound like Ryan when he calls Olivia "Minnesota". Thanks, yall! He loves the farting card, too. We had lots of fun with that yesterday.

Speaking of yesterday, we got to babysit our little friend, Adalynn. She was such a great baby. We had a lot of fun playing with her and remembering what it was like to have a little one in the house. I think Will and Ryan enjoyed her as much as me and Gramma.

Gramma is flying home today. We are all going to miss her a lot, and we're so thankful that she was able to come for a visit. Heidi comes home tomorrow from soccer camp. We have been missing her all week and can't wait to go pick her up. Saturday is Will's birthday. I can't believe he will be 13. He has grown up a lot this past year-in many ways. I have been really proud of him lately. He has been so helpful and especially thoughtful while I was sick. He has taken over many jobs around the house and usually does them without any complaints. He will be having friends over on Sunday to swim and celebrate. The kids have a meet on Saturday. He is hoping to allstar in long-free. That would give him 5 for this year-the most he's ever gotten in one year. Way to go, Will

I went to see Dr. Losken. No news there. I go back in 2 months. Ugh! I didn't know he was from S. Africa, too, and knows Dr. Reisner. Small world, eh?

Thanks for checking in on us and for caring about our family. We have loved receiving your messages and it makes us feel strong. Love, Les, Missy, Heidi, Will, and SuperRyan

We had a nice slow day yesterday. Les and the boys went to see "Hancock" while Gramma and I took Heidi to soccer camp. I miss her already and she won't be home till Friday. :( I am so glad her friend, Michelle, went with her. We have been washing Ryan's hair/head morning and night with Johnson & Johnson and putting antibiotic cream on his sutures. I got worried this morning when some of his hair was stuck to his head. It looked like there was some drainage and/or bleeding. We called Dr. Reisner's office, but we decided after waiting half an hour to just go ahead and drive down to his office. I wasn't going to let them talk me out of it over the phone. He had been on-call all weekend so we didn't expect to see him, but figured somebody could look at it and tell us if there was a problem. His office sent us over to the E.R. so the doc over there called Dr. Reisner and talked to him about Ryan's head. He wasn't too worried since Ryan did not have elevated pressure (intracranial, I'm guessing). They gave us gauze to put on it and some stretchy netting to hold it in place. He has covered it with a cap! We will be able to see how much it is draining. We are going to stay on top of it to make sure there is no problem. Please pray for no infection. That is something I fear-not that I think this is.
I go back to see my plastic surgeon tomorrow. I am anxious to get moving on getting finished with all my stuff-especially before school starts back.
I want to share a funny story with ya'll. You may not think it is funny, though. We have a cat, Freckles. Not a pretty cat or a friendly cat. A lucky cat that Heidi rescued from a storm drain several years ago. Anyway, about two months ago, a small gray cat appeared in our yard. It was starving and very sweet and affectionate, cute, too. We fed it and it stuck around. I met my friend, Diane, a couple weeks ago for lunch. When I left I guess the cat jumped from the top of my car to the top side of the garage door. When I shut the garage door, the cat got trapped in the door. This same crazy thing had happened to Freckles last year, but Freckles was lucky (again) and managed to survive. This pretty kitty was not so lucky. Now all that sounds terrible, and isn't the funny part of the story. The funny part is that our friend, Barre, pulled up in the driveway and saw the backside of this cat sticking out of the top of the garage door and thought it was one of Ryan's tricks. He has had a gray cat (that goes to the hospital with us most times) for years. The kind that doesn't eat, poop, or meow. It just sits. Well, when they discovered it was the real cat, they tried to hide it from him thinking he would be really upset. He saw it and all he said was "Oh crap!". He and his dad buried it and said a few nice words. Crazy!
I will let you know how the drainage goes. Please pray it is all normal. Thank ya'll so much for your prayers and kind words. Love, Les, Missy, Heidi, Will, and SuperRyan

Here are a few more pics of our hospital stay. You can see the crowd we had in Ryan's room the night before his surgery. Thanks, everybody for coming by. Our friend, Kellie, sent him a balloon and a gift card for the gift shop. Thanks, Kellie!! He was quick to go to the gift shop and get some straw/glasses and a remote control car. Thanks, Morris, for hooking us up with the batteries. The first picture is Heidi and Will (really worrying about Ryan) playing with Meredith during Ryan's surgery.
We did go to the swim meet on Saturday. It was a fast meet and we didn't stay but a couple of hours. Both of Heidi's relays qualified for state, but she barely missed it for free and fly in individuals. Will qualified for both relays and short free. He finished in first place for short free!! He got 4th in breast-they only take the top three. So- we will be heading to Tifton the 25th for state. We'll have to work in some cake and fun for Ryan's birthday on Saturday the 26th. We've got company. I will update more later.

These are from our trip to Helen and Chucky Cheese. County Ryan's fingers to see how many strokes it took Les to make that shot. He's doing great. I will add more pictures later.

Dr. Reissner came in this morning and said we could go home!! Ryan said he knew it all the time! He has done so great. He ate some waffles, sausage, and a sugar biscuit last night after everyone left. Then at 10:30, Les went over to McDonalds and got him 6 chicken nuggets that he ate. We are home and cleaned up. It was a very long night. The kids and grandparents don't know that we are out, and we are going to surprise them at the swim meet. This is the state qualifying meet, and the kids have worked so hard. It will be a great surprise. Don't get me wrong, Ryan is not 100%, but he will be there soon. Love ya'll!

Ryan is recovering in the PICU, and we have all invaded the waiting room just waiting to go in and see him. Les did get a peek at him as they rolled him by. Dr. Reissner said that on a scale of 1 to 10, the surgery was a 10!! Woo-hoo!!! What more could we ask for? They got all of the tumor and verified that with the MRI. The biopsy was positive for NB. We all knew that in our hearts. He said that Ryan only lost 3 tablespoons of blood. I know the hard part is over, but not for Ryan. The next couple of days will be tough. Please keep praying for his recovery. Love, Les, Missy, Heidi, Will, and SuperRyan

We have not been able to update the site at the hospital. Their security system won't allow you to bring up personal blogs. :( Thanks to Lauren McSwain we can update on her computer!! We checked in yesterday around noon and Ryan zipped through the MRI which showed that the tumor had shrunk to 25% of its original size!! He said that would make it easier today. We had lots of company last night. The Howards all came including Lauren, and Sarah and Ryan. We missed you, big Ryan! Melinda, Pinky, and Elizabeth (Lighthouse BFFs) came too. Ryan had such a great time. It really kept his mind off things. He got red blood last night and platelets about 3 am. He slept all night. We actually had to wake him up to get some time with him this morning and get him to brush his teeth. We went down with him to surgery. He was very calm. We got a call that surgery had started at 9:17. We got another call around 10:30 that they had sliced and frozen a specimen and sent to pathology. We got another call just a few minutes ago that they were doing the intra-operative MRI and would then put in the ommaya reservoir, and then close him up. I can't wait to get him awake and talking to me. Thanks for your many messages, phone calls, and visits. We are being kicked out of our room here on the AFLAC unit, and are moving to ICU (hopefully not for long.). Please keep praying that he doesn't have any complications-no bleeding, no infection! Thank you! Thank you! Thank you! We love ya'll! Les, Missy, Heidi, Will, and SuperRyan

We've had a fun filled day today. Ryan's buddy, Matt, came early this morning to play with Ryan. We went to see "Walle" and then went to Chucky Cheese for pizza and 200 tokens! I took pictures and I'll post some tomorrow while we are sitting around the hospital. We are supposed to check in at 12 noon tomorrow at Scottish Rite. Ryan wants to go by the mall first and see the people who are living in a car to try and win it- a local radio station stunt. He has an MRI at 1:00. We will be on the Aflac floor, and we hope to have a nurse we know. They will check his counts and make sure his platelets are good and high for the surgery on Friday. We managed to get the tattoo taken off tonight, but no luck with the rest of the red paint. Please pray that the surgery is as easy on Ryan as possible, and that he has a fast recovery. We will post when we can. And- please pray for our friend, Carrie, as she gathers with friends and family to celebrate Luke's life on Saturday. I know it will be extremely difficult for her, and we wish we could be there. Thanks for checking in on Ryan and for your many prayers and well wishes. Love, Les, Missy, Heidi, Will, and SuperRyan

Here are a couple pictures from our weekend. Don't worry, he wasn't really injured. He just put together a new costume! He did have fun with it, though. The other picture is him out by our pool. He was mad about something. Some days, he just has no patience. I think it is related to his keppra.

We all had a great time at the Lake Lanier WaterPark yesterday. It wasn't unbearably hot, so that made it really nice. We are looking forward to a slower pace today and some good family time. My mom is cooking ribs and all the fixins for everyone at the farm. We have a few fireworks left for tonight. Ryan picked up a few gruesome tattoos yesterday. He put one on his bald spot (where they did the gamma knife) so it looks like his brains are hanging out. It looks like maybe his hair is starting to come back there.
Ryan has an appt. at Emory Winship Monday morning to prepare for the radiation. I tried to get an appt. to go back to see Dr. O'Regan at the same time, but she is on vacation. It will be nice to get this appt. out of the way before his surgery. They will make a net-like mask that goes over his face and fastens to the table to hold him perfectly still. He will have fun with it afterwards. Speaking of fun, we are thinking about heading to Helen on Sunday for some tubing. We hope the water level isn't too low.

Please pray for our dear friend, Carrie. Her little Luke passed away on Tuesday. They are back in Florida today with their family. She has been so strong and brave taking care of him by herself. Our hearts are just broken for her.

We hope you have a wonderful 4th with your friends and family. Thanks for checking in on us and for your prayers. Love, Les, Missy, Heidi, Will, and SuperRyan

Ryan's surgery has been scheduled for Friday the 11th for the residual tumor extraction and ommaya port placement. He will have 2 weeks to recover, then move to 10 days of whole brain radiation. We are hoping to start radiation July 28th. This will take us through August 8th and then be available to start 3f8 as soon as we can in NY. It's a lot, we know, and we are going to work as much fun as we can into all of it- and Ryan's birthday falls in the midst of it, too. (Is there a special surprise brewing ??)
His platelets were 67,000 today. We saw lots of friends from Camp Sunshine and got some more details of Ryan's week. He has been holding out on us. He got the "pre-teen heart-throb" award at camp. Evidently there were a few girls who hung close to him last week. We are still working on getting the red paint out of his hair.
That is all for now, too tired to think about all of it. Thanks for checking in on us. Please keep Ryan in your prayers. Love, Les, Missy, Heidi, Will, and SuperRyan

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