Super Ryan

Ever have a week where it seems like everything at your house is breaking down? We have had about 3 or 4 in a row like that. I keep telling Les, and reminding myself, that it can all fall apart as long as Ryan is ok, but enough is enough. I guess our luck will turn soon enough, next week would be nice, like during Ryan's scans. We don't have a date yet, but we're hoping for next week. He seems to be feeling well. He had fun at his school dance last weekend. Heidi and Will had a blast at sibling camp. Thanks, Camp Sunshine!! We took Todd and Teddie to the lake for a bit on Saturday. Ryan was hoping they would love the water as much as our old dog, Sandy. Todd warmed up to the idea, but Teddie was terrified of the water. After we got the kids back home on Sunday, we went to see our friends, the Greshams. They had an inflatable jousting/boxing ring in their backyard for a birthday party (Happy 14th, Grayson!!), and the kids couldn't wait to jump and play on it. I think they all loved beating up on Dad. We are so thankful for our friends. Ryan's soccer coach brought his little girls over to swim. Thanks, Coach Mark. Ryan loved that. We are back to see Dr. Anderson on Thursday. We'll get his counts and catecholomines checked, but we won't get results on the latter until next week. Please keep praying for clear scans. Love, Les, Missy, Heidi, Will, and SuperRyan

Yes, WSB raised over a million dollars for the Aflac Cancer Center at Scottish Rite and Egleston. Isn't that awesome? Thank you to everyone who contributed. Ryan's teacher let their class listen to him on the radio. He had a really good weekend. He had enough paying customers at his yard sale to get a few new Power Ranger and Star Wars toys. How many light sabers can one kid want? He seems to be feeling great, is eating good, and has plenty of energy. He goes back to the dr. for a check up next Thursday. I am trying not to think about it and only focus on the positives. Heidi and Will are off to sibling camp this weekend at Camp Sunshine. They are excited about it, but not Ryan. He misses them when they are not around. He has a birthday party to attend, so that will be fun for him. Please keep us in your prayers. Thanks, Les, Missy, Heidi, Will, and SuperRyan

Ryan did such a great job on the radio yesterday. He asked people to donate 2 million dollars!! It was so comforting to hear people say how great he looks. We got to meet Trenton's grandmother. He is on his first transplant and really struggling right now with a yeast infection in his bloodstream. Please visit his site http://www2.caringbridge.org/ga/trentonsjourney/index.htm and offer words of encouragement. I feel so badly for all of them right now. It was an emotionally exhausting day telling Ryan's story on the radio and just being back on the Aflac floor at Egleston. We got to finally meet Kellie Porter. She has been so supportive of Ryan and our family. She works for CHOA foundation and moved here from Seattle where she was a neighbor of someone Les does business with. Small world, huh? She checks on many of the children regularly and is just one example of the love and concern that fills the rooms of the hospitals. Thanks, Kellie, for the cookies. Please keep Ryan in your prayers. Thanks for all your posts, emails, and phone calls. Love, Les, Missy, Heidi, Will, and SuperRyan

The heaviness of the last week seems lifted off today. Ryan slept in this morning after a dose of phenergan. He woke up and ate breakfast and seemed to feel a good bit better. He was happy to get to go to Grand-daddy's and get his help on building a sign for his yardsale. He even went to his first soccer practice. It was such a beautiful sight to see him back on his same team with Coach Mark. It worked out great that thunder storms cut our practice short. I was worried about him over-doing it. We listened to the Care-a-thon nearly all day. We heard our friends, Brady and Caroline. I think Ryan is ready for his turn tomorrow. Don't forget to listen around 1:30. I can remember last year we were inpatient at Scottish Rite, and the nurses posted how many dollars had been raised all day. They have far exceeded last year's care-a-thon already. We are so glad to be able to do something to help raise money for our hospital. Thanks for checking in on us. Please continue to pray for Ryan's cure and the same for all our little friends. Love, Les, Missy, Heidi, Will, and SuperRyan

Ryan hasn't been 100% for the last couple weeks and appears to be getting weaker each day. He has had bad headaches, pain in his abdomen to where he doesn't want our arms around his tummy, nauseous, and arm fatigue. He couldn't sleep last night and is feeling sick this morning. It's "Doughnuts with Dad" today at school, but in a weak little voice he told me he couldn't go.
After reading the full page of tiny typed possible side effects of Accutane, it certainly contains all of Ryan's complaints. Some are: increased pressure on the brain, joint and ligament pain, and liver damage just to list a few. He has just one more round of Accutane to go, like all of his past treatments we are praying there is no permanent damage to our little guy's body. We will be speaking with his doctor today to try to nail down the origin of all these symptoms. He has decided to have a yard sale this weekend to make some money to get more Power Ranger gear. I think he mostly just wants to have a yard sale. He is excited about making a sign and having people come by, even if his only customers turn out to be nanny and grandaddy. Les, Missy, Heidi, Will, and SuperRyan

Ryan had his ultrasound scan this afternoon. The UT tech scanned and recorded images for almost 45 minutes then left to discuss results with a doctor. They both came back into the room and this time the doctor lubed him up for a couple more passes just to be on the cautious side. To them, all of the images showed no sign of tumour. Our doctors will be reviewing the scans tomorrow with likely the same analysis. The news brought a sigh of relief and should hold us over until Ryan's early September re-do of the CT and MIBG scans and they both come back clear also, (fingers crossed). Thanks so much for holding Ryan tight in your hearts, we feel it everyday. Love, Les, Missy, Heidi, Will and SuperRyan

Ryan has a late ultrasound scan Wednesday at 5pm (maybe traffic will have died down:) The idea is to scan his liver to see if there is any tumour growth. It's a long shot at imaging small indications but we'll try anything to catch a relaspe as early as possible. Ryan is still doing well, loves school and all his friends and can hardly wait for soccer to start on Thursday. Wish Ryan luck and we'll update with the results. Les, Missy, Heidi, Will and SuperRyan

We all had such a wonderful day. We took the kids to Hurricane Shoals Park and played in the water. They had a blast playing and sliding down the shoals. After a yummy picnic, we headed home to swim in the pool. Last night was the swim team banquet, and they all brought home trophies, towels, and swim caps. Will and Ryan spent the night with their friend, Jackson. The dryness hasn't been too bad this go round, as of yet. We still have 6 days to go. School pictures are this week, so that's a bummer. There's always make-ups. The party for the 2006 Aflac calendar artists that was scheduled for tomorrow at Egleston has been cancelled. I promised the kids I would take them for ice-cream anyway. They are sending him a framed copy of his artwork, so that will be nice. You can hear Ryan's interview on WSB for the Aflac Care-a-thon on Friday at 1:36. The News/Talk 750 WSB Care-a-Thon benefiting the Aflac Cancer Center starts Thursday and runs through Friday. Anyone who donates $200 will receive the prestigious 2006 Aflac calendar. We will be in touch with the hospital tomorrow to get the date and time for the ultrasound. Please remember our friends, the Alains. I can't imagine how much they are missing Ethan, yet they continue to stay in touch with us and offer words of kindness and encouragement. Ryan hasn't complained of any more pain and has had lots of energy this weekend. That makes us all feel better. Please continue to pray that his cancer is gone and Ryan has a clearly visible normal ultrasound early next week. Thanks again to everyone for keeping up with and praying for our Ryan. Love, Les, Missy, Heidi, Will, and Super Ryan

Any news other than "all clear" simply sends you spinning. We have spoken with Ryan's doctors in greater detail and our immediate plan is to have an ultrasound done early next week to hopefully get a clearer picture of his liver. No matter what that outcome of the scan is, we will still be repeating the CT and MIBG scans in 4 weeks. Dr. George needs the time to make sure there will be definitive changes between this week's scans and the next ones. He says he is cautiously optimistic, yet still nervous. Should the new scan intensify, Ryan will be scheduled for another surgery to biopsy the liver for conclusive identification. We were hoping for a simpler, less intrusive type (needle), but the proximity to Ryan's heart makes that approach too risky. If that is confirmed, Ryan will undergo another surgery to remove the potion of liver effected and begin chemo, then radiation. He had complained of pain in his back last weekend and in his chest yesterday. Missy ended up spending the day at school with Ryan and the pain went away. We are thinking there could be some separation anxiety going on after the last year of Ryan being with at least one of us 24/7. Missy explained to Ryan that he and she is "OK" while he is at school, and he is where he needs to be, not to worry. Obviously, we are hoping and praying that this all will not be required, but it is also slightly comforting knowing we have a plan. Ryan is in good spirits. His best friend Matt spent the night which always makes him very happy. Check out the video we added that tells about Alex Scott. You may have seen the huge posters of her hanging in the Mall of Georgia. Thank you all for your phone calls, emails, and posts to the daily chat, and most of all, your prayers for Ryan. It is so very comforting to know that so many are thinking of us. Please continue to lift Ryan up in prayer that his cancer is gone. Much love, Les, Missy, Heidi, Will, and SuperRyan

A short note on Ryan's scans this week. His CT scan went smooth and came back clear yesterday but we have a problem with his MIBG scan. Ryan's liver has shown isotope uptake. Dr. Anderson called and tried to explain that it could be just an anomaly and we would confirm the findings on a second scan in 30 days. If the scan remains constant or intensifies, Ryan will be in a desperate situation. We are hoping and praying for a miracle. Sadly, Les & Missy

When will this air horn run out of air? Ryan played all day Sunday with his friends, Max and Rachel. I got a call about 10 this morning that he was in the clinic with a bad headache. We are very lucky to have so many friends at school. When I got down there he was in the gifted teacher's room (Max & Rachel's mom) on a beanbag. As a precaution, he had been whisked out of the clinic because of the numbers of sick kids in there. He was happy to see me and I think just trying to finagle a lunch date. I know he was feeling fine after he, Matt, and I had enjoyed our yummy school lunch. I am starting back to work only 12-15 hours a week, and he is none too happy about it. I don't think he will really ever know I am gone, as he will be at school. He will be out of school all day tomorrow for his CT Scan and MIBG injection. He got down the first dose of iodine pretty easily this morning. Who knows? Maybe his headache had something to do with taking iodine, bactrim, and accutane all at the same time, though I am certain this isn't the first time it has happened. We did learn something promising about the Accutane Saturday while visiting with other cancer mom and dads at Ethan's funeral. Gwen's mom and dad were asking Dr. Rapkin if the medicine might make her irritable. Caroline's mom and dad thought it did, but we had chalked Ryan's irritability up to all the chemo, general tired of being sick, and a somewhat irritating older brother. It would be so great if it were due to the meds. That means that in Sept. it will go away!! That would be so awesome. Well, I doubt we will get any results tomorrow, but I will post as soon as we know something. Please pray that Ryan's cancer is truly and definitely gone, and nothing shows up on the scans. thanks, Les, Missy, Heidi, Will, and SuperRyan

It has been really hard to keep our spirits up this week. I wish there were magical words that would make Ethan's family somehow feel better. We will be searching for the right words tomorrow at his funeral. Please say a prayer for them to find the strength and courage to get through the day and to find peace in their hearts in the days to come. I am not really sure that could ever be possible. Ryan, Heidi, and Will have all had a good first week of school. Les is taking Ryan to Dave & Buster's in Marietta in the morning to be interviewed by Randy and Spiff on 94.9's morning show. The interview will be aired during the Christmas holidays as a fundraiser for Make-A-Wish. He starts the 5th round of Accutane on Sunday, and he has to start taking the dreadful iodine on Monday to get ready for his MIBG injection. The iodine saturates his thyroid gland and protects it from the radio isotopes. He has to take it for 6 days. Yucch! Please pray for his ability to cope with all this yucchiness, and, of course, for clear scans. Thanks, Les, Missy, Heidi, Will, and SuperRyan

Ethan is pain free, forever. But I know that his wonderful parents, and his brother and sister's pain has just gotten much worse. Our hearts ache for them. We pray that their walk out of this dark valley will be short and filled with the love that Ethan surrounds them all with. May God bless them all.
Les, Missy, Heidi, Will and Ryan