Super Ryan

Ryan's standard monthly appointment was just that, standard. All counts are in the usual ranges for Ryan at this time. We should get the catecholamine results on Monday. Ryan's were 300 when diagnosed and now, are less than 5. This test is the most telling for us laymen! Ryan will be scanned with CT and MIBG on August 8th and 9th. We are also having a blood sample sent to a lab in Canada for a "TH Test". This test has been used to show the probability of a neuroblastoma relapse. If positive for relapse, it's accuracy is about 80%. If negative for relapse, the accuracy is about half that. I believe the results will help with future decisions we may need to make down the road as far as trial therapies for Ryan.
We have just wrapped up his birthday party with all his friends. We had a 10:30 start for a pool party/food fight party. They had a blast. Missy made spaghetti, jello, and marshmallows. Messy, yet amazingly clean in a strange way. After a month of 90 plus, it rained during the party. The kids didn't miss a beat though. It just made it all the more fun! Most have left, but about 8 are still burning around here playing starwars with their lightsabers. The kids all got to visit their new schools and teachers this week. They are very excited to be starting on Monday. We are hoping and praying for a complete year at school for Ryan (Heidi and Will too !) and we hope he can handle the 2nd grade work without becoming overloaded. I'm sensing lots of homework in our future! We also have soccer starting. Will started today and absolutely loved his new team. Heidi and Ryan will start in the next week or so. Ryan's Dr. said his bones are good to go as far as strength, he just needs to recover his stamina. Thanks again for keeping a eye on our little buddy, and if you can, share some strength with Ethan and his family in his guest book. They are traveling down an absolutely devastating path with tremendous courage and conviction. They are filling Ethan with as much love and joy as he can absorb. Les, Missy, Heidi, Will and our Super seven year old, Ryan.

Just a quick post, as it is busy around here with a little 7 year old running around wanting to open presents. His buddy, Matt, came over and spent last night with him, and we are off to the movies and to play. Last year, on his birthday, all his hair fell out. The picture in yesterday's AJC was so adorable with all the kids giving a "parade wave". Please pray for our friend, Ethan, who is inpatient at this time fighting an unexplained fever. They are really struggling, and our hearts are breaking for them. Love, Les & Missy

We have a day off from all the hustle and bustle. The state swim meet was great, but incredibly hot. Will's relay team came in 5th and 7th places in their events, and Heidi's free relay team came in 2nd place. Wow!! Ryan has such an intolerance to the heat and humidity. He was pretty miserable on Friday, so we sent him and Will home with some friends after Will got his medals. We didn't get home Saturday till nearly midnight. I had a good chat with Chandler's mom while we were down there. They only live about 15 minutes from Tifton. Their Lighthouse trip last week got cancelled due to Hurricane Dennis. What a bummer!! We knew quite a few families that were going, and we know what a break they could have used. We saw a lot of our Lighthouse friends at church at Northpoint on Sunday. The Lighthouse pastor, Clay, had been invited to speak and did a wonderful job. We heard a great message. We then went back to our Family Partners home, the Howards. The Butterfields from McDonough came also, and we had a great time together. Thank you, Pat, for all your hard work. She made a great lunch for all of us. Ryan was glued to Steve most of the day. Tomorrow is his 7th birthday, so we will, no doubt, be into something fun. His Star Wars party is on Saturday. Les called this morning and said his picture is in today's Atlanta paper. So, look for that if you get a chance. Please continue to pray for Ethan. He is inpatient with fever and has been for several days. Most times they never know what causes the fever, but they think he may have a virus. Thanks for checking in on Ryan and for your prayers.

I hope all of you were as enfuriated as we were after reading the article in yesterday's USA Today. It is so sad that it all comes down to money. I wish they could know Ryan and all the wonderful kids we have met over the last year. We have to find a way to let them know these kids and get more new drugs made for children. There are two new ways to help, though. Hayley's mom and dad have been working hard with Cure Search and have officially opened registration for the Cure Search Hayley Thomson Challenge which will be at the Cherokee Country Club in November. I have received some brochures, and it looks like its going to be a great golf tournament. Please check out the website at www.curesearchhayley.golfreg.com. I can't begin to imagine their pain of watching Hayley endure her treatment and then losing her. but we are so thankful of their efforts to raise funds for pediatric cancer research.
Cure Search is finally offering the green wrist bands in youth sizes now. Ryan has been wearing one around his ankle, so he was glad to hear he could get a smaller one.
Cure Search is also planning a luncheon for Moms of kids with Cancer in September to help raise funds for research. The website for that is www.quietheroes.org . Two well known cancer moms will be speaking, Lance Armstrong's and Alex Scott's. You know Lance, but you may not know Alex. She was a little girl who passed away Aug 1, last year. She fought Neuroblastoma for about 8 years and held lemonade stands to raise money. Now they have lemonade stands all over the country and are close to reaching the 1 million dollar mark. You don't have to be a mom of a child with cancer to attend the luncheon, and you can sponsor a cancer mom.
On a sidenote, Ryan's article was supposed to be in today's AJC, but it has been moved to Sunday's paper. According to Jena's mom, they fell in love with all the kids and wanted to move it to Sunday, which is great, because many more people read the Sunday paper than any other day. Maybe some of the pharmaceutical folks will check it out. Thanks for checking in on us. We are off to Tifton (yes, below the gnat line!) this afternoon and will be back to see our LightHouse Family Partners, the Howards, on Sunday. The kids can't wait to see Meredith and Patrick. We are looking forward to hearing Clay speak at their church at Northpoint. One more week and it is back to school, ugh!! Ryan's 7th birthday is next week so we will have another Star Wars celebration on our hands. His scans have been scheduled for August 8, 9. I am dreading it already. Please keep praying for him and all our little friends. There are so many. Love, Les, Missy, Heidi, Will, and SuperRyan

Who's fighting cancer in kids?
By Liz Szabo, USA TODAY

Fourteen-year-old Max Levine owes his life to experimental cancer therapies. Yet a drug that helped keep him alive might never reach the market.
The Florida Times-Union University pharmacists mix the medication, called 131I-MIBG, for patients who have no other options, says his doctor, John Maris, an associate professor at The Children's Hospital of Philadelphia. Max's disease — neuroblastoma, a tumor of the nervous system — afflicts just 650 children a year and is too rare to attract drug developers, Maris says. The tumor, like all childhood cancers, is considered an "orphan" disease. "If our trial is successful, and we prove this drug cures patients, there is no guarantee that anyone is going to make it," Maris says. "We could say, 'We've proved this drug works, but we don't have any.' " (Related story: Kids' cancer drugs run short) By Eileen Blass, USA TODAY

Max Levine, 14, of Cherry Hill, N.J., was diagnosed with cancer in 2001; he is fighting the disease with drugs.
Maris is one of many doctors who are frustrated by the lack of interest in developing drugs for young cancer patients. A government report in April found a "near absence" of research into pediatric cancer drugs. About half of the oncology drugs used to treat children are at least 20 years old, according to the report by the Institute of Medicine, a non-profit group that advises the government on health policy.
Most drugs given to children were developed for adults, then passed down to children. In the past 10 years, only one cancer drug, Clolar, has received initial approval for children.
Stephen Sallan, chief of staff at Dana-Farber Cancer Institute in Boston, says adults attract more cancer research than children because they are a far larger and more lucrative market. Patients younger than 20 make up 12,400 of the nearly 1.4 million Americans stricken with cancer each year. Drug companies are generally unwilling to invest hundreds of millions of dollars into such a small market, he says.
Why adults instead of kids, Drug companies say there are sound reasons to focus on adults. Susan Desmond-Hellman, president of product development at Genentech, says she's compelled by the opportunity to help large numbers of patients. Not only does cancer strike far more adults, but their disease is less curable: 64% of adult cancer patients can be cured, compared with 80% of kids.
Organizing clinical trials for children also is difficult, Desmond-Hellman says. Because doctors are reluctant to try experimental drugs in kids who might be cured by standard ones, only a fraction of pediatric patients are eligible for early clinical trials. Enrolling enough kids to test a new drug can take years.
There are financial risks, as well. Companies typically invest more than 10 years and $800 million to bring new medicines to market, according to the Tufts Center for the Study of Drug Development.
Companies fear that if problems surface during pediatric trials, an otherwise promising drug might never be approved at all, even in adults. "It's a big risk for a small reward," Sallan says.

Because new, patented drugs are the most profitable, relatively few companies are interested in the older, generic drugs on which young patients depend, says Mary Relling, pharmaceutical department chair at St. Jude Children's Research Hospital in Memphis.
Production problems at one plant can disrupt the entire supply of a drug. Recently, doctors have struggled with shortages of at least five key oncology drugs. In one case, some children have had to go without a leukemia drug.
Doctors such as Sallan say they don't want to give up on children with cancer, who have perhaps more to lose from the disease than other patients. Young survivors pay a high price, their bodies scorched for up to three years with therapies so toxic that many are left permanently disabled.
New "targeted" therapies, which mostly spare patients from the ravages of conventional chemotherapy, might allow young survivors to lead normal, healthy lives, Sallan says. These breakthrough drugs are being tested almost exclusively in adults, however. Only one, Gleevec, has been tested in children and approved for their use.
Targeted drugs developed for adults might not help children, says Mitchell Cairo, chief of pediatric hematology and bone-marrow transplantation at the Morgan Stanley Children's Hospital at Columbia University.
Chemotherapy works for all ages because the drugs act broadly, poisoning growing cells — healthy and malignant — throughout the body. Today's "smart drugs" target only cells with particular genes, Cairo says. But the genes targeted in common adult cancers may not be the same ones that drive pediatric tumors. And targeted therapies often work for only a fraction of patients with particular types of cancer, which could shrink the market even further. Maris says what children really need are drugs designed just for them.
The Food and Drug Administration has created a number of incentives to encourage companies to make pediatric drugs. Through its orphan drug program, the FDA awarded Genzyme seven years to sell Clolar without competition from generics. Because Genzyme tested the drug in children, the FDA extended that exclusivity by six months. The FDA also gave Clolar "accelerated approval" in December, based on a study of 49 patients.
Yet such incentives haven't done enough to promote new pediatric drugs, according to the IOM report. Businesses have no incentive to test drugs in children early, because they receive the same benefits if they conduct trials before or after approval, the report concludes.
"There's a reason these drugs haven't gone forward," says David Parkinson, who collaborated on the report and heads the oncology development at Amgen. "They cost more to develop than they will potentially earn."
Promising strategies . Some doctors say they're starting to see progress. Researchers are testing more than 20 targeted therapies in children, says Malcolm Smith, associate branch chief of pediatrics for the National Cancer Institute's cancer therapy evaluation program. Several medications such as Velcade, Rituxan and Iressa already have been on the market for adults for several years. Many doctors would like to see drugs tested in children earlier.
That's why the NCI recently created a program to screen 10 to 15 promising drugs in the lab against common pediatric tumors.
Advances in molecular biology also may help. At Dana-Farber, scientists enroll patients in studies based on the biology of their tumors, not on their age, Sallan says. Doctors are planning to test a drug in adults and children with a type of leukemia.
St. Jude has launched a $10 million effort to begin testing drugs earlier. The hospital's director, William Evans, hopes industry eventually will collaborate with St. Jude, which recently opened a drug-making facility, to develop new therapies.
More coordination is needed, While such steps are encouraging, they are still far too rare, Parkinson says.
He suggests a more systematic approach: Government, university scientists, industry leaders and patient advocates could form a "public-private partnership" to jump-start drug development. Through this kind of partnership, biotech firms might share their "libraries" of experimental compounds, Parkinson says.
The NCI could help coordinate trials, and companies could keep the right to sell successful products. The partnership, acting like a non-profit corporation, could shepherd drugs through the approval process, then commercialize them.
"We will need someone to drive this process, to say, 'Our mission is to develop new cancer drugs for children,' " says Peter Adamson, an editor of the IOM report and chairman of the developmental therapeutics program of the Children's Oncology Group, a national research consortium. In the case of abandoned drugs, the IOM report calls on the NCI to step in as "developer of last resort."
Families say they are willing to do their part. Nearly half of child cancer patients participate in NCI-sponsored clinical trials, compared with only about 4% of adults, Smith says.
Max's mother, Sue Levine, says she's counting on scientists to come up with new drugs. Experimental therapies have given Max two years. Although 131I-MIBG stopped working after six months, it kept the Cherry Hill, N.J., boy alive long enough to become eligible for another experimental drug, which has controlled his cancer for a year and a half.
"The fact that my son is here playing with his GameBoy is a miracle," Levine says. "If my son can give these doctors some knowledge, he's willing to try it."

We had a very long day yesterday at the swim meet. Heidi met her goal of swimming an Allstar time. Hooray! Will's relay team got 1st place, and I think Ryan thought of himself as one of the big kids when he was disqualified in the back stroke.
The picture is from our visit with my friend, Diane, and her kids at Jillian's a few weeks ago. Note Ryan's mohawk. He learned to do that at the Lighthouse. Well, after running out of money on his card at Jillian's, he decided to stick his plastic fork in the card reader on the pinball game, and darn if it didn't make the game work. Then, of course, he broke the fork off and left it wedged in the game. Oopsie! His broken fork did make a good razor though. All in all we had many laughs. We visited our old friend, "Mr. Victor" this past Friday. Victor Lord worked at the Rec. Dept. for many years. Ryan loved sitting with him on his John Deere Gator while Heidi and Will played soccer. Mr. Victor is in the nursing home in Winder. Ryan was very sad to see how he has aged, but the kids are excited about making him some posters to brighten up his room. We took him a picture of him and Ryan on the Gator, and he loved that. Ryan is anxious to get pancakes started this morning. He wants them made in the MapleLeaf pancake molds. Life is never boring. Will's birthday party is today, so we will be busy getting ready for 17 boys (and girls, oh my!) to tear it up at 2. Wish us luck with that. Ryan's birthday party will be in another 2 weeks. He is so excited about that. He goes back to the dr. on the 28th and scans will follow shortly thereafter. Please keep him and all his friends in your prayers. Thanks so much.

This is our old little cartoon character, Ryan. He was clowning around before his event at the swim meet a few weeks ago. Today is his last meet of the season so we won't be able to make it to the Cure Family Picnic, which is a bummer, but he has looked forward to League Championships for so long. He is doing well with the Accutane. We are just keeping his face gooped up with Vaseline and that seems to be working best. He had his picture made yesterday for the Atlanta Journal which is supposed to be in this Thursday's paper. It is an article on the Has Been Beauty Queens that hosted the Prince and Princess of Hope Pageant and won the Cosmo Girl contest, but I made sure Ryan had on his CureSearch "Childhood Cancer Stinks" t-shirt. I said if there is a message we want to send, that would be a good one. So, we are off to Gainesville for 7:30 warm-ups. Keep your fingers crossed that Ryan, Heidi, and Will swim fast, for all those that are up this early that is!!

Todd is on the left and Teddie 

We would like to start by thanking the Alain's for letting us visit with them and Big E. We stopped by Scottish Rite this afternoon while Ethan was getting his last chemo for this cycle. He sure looks good, but looks are very deceiving. We know just how sick he really is. So once again, please place this wonderful warm family at the top of your prayer list and let friends know to do the same.

Ryan has been very active and has a lot of his appetite back (he's still only 40 lbs). He loves to play with the puppies and is back to playing pretty rough with his big brother Will. He started his 4th round of Accutane this morning. He really doesn't like the "peeling" side effects, as minor as that is. He always likes to look his best!
We shot off a bunch of fireworks last night at the farm with Nanny and Grandaddy. The kids love it best when they tip-over and go screaming across the grass or better yet, towards Nanny's car!
On Saturday, Ryan and Dad went to see "Snow White" at the Center for Puppetry Arts with a bunch of our cancer friends. Thanks to Camp Sunshine for sponsoring this event. They created a cute hand puppet after the show. Ryan says it is a puppet of "Dad"!!
Mom took Heidi and Will to the district swim meet and both ended up qualifying for the state meet in two weeks. We are all going together this year. We need to be down in Tifton, Ga for 2 nights so it should be lots of fun.
It's hard to believe we are only 20 some days until school starts back. We have had a very busy summer so far and plan on taking the rest of what's left a little slower :) We still have no photos of Todd and Teddie so I'm popping outside right now to see if I can snap a couple to put up. Thanks for all the support for us and our new friends, Love Les, Missy, Heidi, Will and SuperRyan.

It's hard to update Ryan's site since Ethan's relapse. We have a sense of sadness, turmoil, fear, and are very tired. We can only imagine what Ethan's family is going through.
Stage IV, or high risk cancer leaves parents in a very precarious situation. To relapse is a dire diagnosis. We have spent the most extreme protocol on the first fight leaving only experimental options open in the event of a relapse. It feels like someone has flipped a coin high into the air, and I can see it spinning in slow motion, not moving up or down and we're here just holding our breath waiting for it to drop. We are attempting to focus on Ryan's positives along with keeping Heidi and Will happy and all of us busy doing things together.
On the brighter side, Todd and Teddie, the kid's new puppies, are fitting in perfectly! The kids just love them like crazy and have been doing great looking after them. We should have pics of the pair by this weekend.
Thanks for checking in on Ryan and please keep Ethan and his family on the top of all your prayers. We hope to see them soon.
Lots of love, Les, Missy, Heidi, Will and SuperRyan