- 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.
Tuesday, March 28, 2006
Next, please pray for my Aunt Sue, in Alabama. She is going through chemo and radiation for lung cancer. Please pray that her treatment will be effective and tolerable. And, please pray for one of the moms at Ryan's school. Cindy Jones is having serious heart problems. She was a major force in FORM that was so supportive of us during Ryan's treatment. Cindy is such a giving, generous, and thoughtful person. Please pray that she will get good news from her tests. Ryan played a very physical soccer game tonight. He got hurt and they stopped the game a bit. It was hard not to run onto the field, but Coach Mark was there. He got up and finished playing. He told me afterwards that "I got stomped, kicked, and tripped, but I finished playing!" As always, thank you all for holding Ryan close to your heart and for praying for him. Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, March 26, 2006
Electric Sliding Into Spring...still feels like Winter
We have been busy as usual. As you can see from the pictures, we had a special night last night. Heidi and Will completed their year at Perfectly Polished with their Spring Formal. We really enjoyed getting to watch them show all their dances. Poor Heidi was so tired. She left Wed. morning at 5 on a school field trip to St. Simons Island off the GA coast. She didn't get home till after 8 Friday night. It was a great opportunity, but she was just worn out. We sure missed her, too. Ryan has had a little break from soccer this week because of the cold wet weather, but Will won't let that stop him. He had a game yesterday and has another today in Athens. Ryan didn't go with us last night. We knew that it would run late, and he would not be real happy having to sit still for so long. Next year, he can go and see what he gets to do when he is in the 5th grade! :) We did get results from his urine tests, and they were both normal, as we expected. We will have it checked in about 6 weeks at a local lab. I need to call and make him an appt. with his radiation oncologist for the next 6 month check-up. I just want to be able to take him when he won't miss school. He got very good marks on his report card. One more week until Spring Break. Yahoo!! We are tagging along with Les to Tampa. We will take in a couple of Tampa Bay Lightening games, thanks to Les' friend, Mike. He has generously give us tickets, again. Speaking of hockey, Les has just shown me that Ryan's picture is in the Winder paper with the Atlanta Thrashers. He will love that. Thanks for continuing to check in on us and for praying for Ryan. Please continue to thank God for Ryan's cure and ask Him to keep him safe, healthy, and strong. Love, Les, Missy, Heidi, Will, and SuperRyan
Friday, March 17, 2006
Do you think the word is getting out?
The Conquer Childhood Cancer Act of 2006 authorizes $100 million—$20 million annually—over a five-year period starting in 2006 to support biomedical research programs, which directly translates into increased survival rates for children with cancer. The legislation also provides funding for informational and educational services to families coping with a diagnosis. It will establish a national childhood cancer database that will enable researchers, for the first time, to study the population of children with cancer and to monitor the incidence of pediatric cancers, identify cancer causes and aid in the development of prevention strategies.
Also in a show of support for this lifesaving legislation, Ken Martin, Director of Community and Diversity Programming for the National Hockey League (NHL) represented the league at the introduction. The NHL is partnering with CureSearch in an expansion of the NHL Foundation’s “Hockey Fights Cancer” charitable initiative that raises funds and awareness for cancer patients of all ages.
“The National Hockey League is dedicated to the fight against childhood cancer and proud to be associated with CureSearch through the Hockey Fights Cancer program,” said Martin. “We are honored to be present for the introduction of the Conquer Childhood Cancer Act. We believe this event will be a unique opportunity to spotlight the cause of childhood cancer, the tremendous leadership in the United States Congress and our shared efforts to find a cure for childhood cancer."
About CureSearch. CureSearch unites the world’s largest and most prestigious childhood cancer research organization, the Children’s Oncology Group (COG), and its public awareness and business partner, the National Childhood Cancer Foundation. Working together, the two entities support a network of more than 5,000 doctors, nurses and scientists who conduct clinical trials and perform cutting-edge research to cure childhood cancer at more than 200 COG member institutions. The COG represents every pediatric cancer program in North America, providing state-of-the-art medical and nursing care to more than 90% of children with cancer. CureSearch (http://www.curesearch.org/) is dedicated to reaching the day when every child with cancer can be guaranteed a cure.
Read the official statements about the Conquer Childhood Cancer Act of 2006 from:
Senator Norm Coleman (R-MN) Senator Jim Talent (R-MO) Senator Joe Lieberman (D-CT)
Senator Conrad Burns (R-MT)Congresswoman Deborah Pryce (R-OH)
Congressman Michael McCaul (R-TX)
Monday, March 13, 2006
Article echoes our feelings exactly!!
The American Cancer Society's Relay for Life is the world's largest fund-raising relay event, with more than 4,500 events in the United States and additional ones in other countries. In Georgia, there are more than 150 events. Gwinnett County's is the largest Relay for Life event in the world.
More than 3 million Americans will participate in relay events this year in honor or memory of a family member or friend affected by cancer. They will spend countless hours and donate more than $400 million with the expectation that their time and money will get us closer to a cure for cancer.
But which cancers will benefit from that money?
There are roughly 100 different types of cancer; each one takes different drugs and treatments or different combinations of the same drugs and treatments. As with any other financial entity, the American Cancer Society budgets its income (donations) according to the largest need down to the smallest need. There will be about 1.4 million adults diagnosed with cancer this year. In contrast, there will be only about 12,500 children diagnosed. Also like any other financial entity, the American Cancer Society and Relay for Life look for creative ways to promote their cause in order to maximize the inflow of funds.
Gwinnett County raised nearly $2.3 million dollars in its relay last year, with 1,716 cancer survivors participating and 10,000 people taking part. The Gwinnett school system donates the most money — more than $1.1 million. Ninety-five percent of Gwinnett schools participate.
To promote the relay, organizers search for "Honorary Chairpersons" — people who have battled cancer and survived or are still battling cancer, but are survivors! The honorary chairpersons are presented at a large kickoff pep rally with guest speakers, recording artists, testimonials and all the fanfare. They're paraded across a stage for all to see who we are fighting for. We want to help these people! At the 2003 relay, my 4-year-old daughter Shelby was an honorary chairperson. There were 20 that year — 19 children and one adult. Shelby was the youngest.
Shelby was diagnosed with the childhood cancer neuroblastoma on Nov. 30, 2001. Only about 600 cases (some reports say 1,000 or more) of neuroblastoma are diagnosed each year. Half of these children will die within five years. Since Shelby participated in the Relay for Life, I have learned a lot about the distribution of donations within the cancer world.
As I mentioned before, the cancer society distributes its funds according to the greatest need or the greatest number of patients affected. According to the society's funding chart for 2002-2003, $132 million was given to cancer research — and only $7 million of that amount was given to childhood cancer research.
Donations for the same time period were nearly $1 billion. The other $868 million went to cancer awareness programs, group counseling, seminars, resource guides and many other help programs, as well as smaller amounts for fund-raising efforts, salaries and other administrative expenses.
One side note: When we tried to get a brochure on programs for children diagnosed with cancer, there wasn't one.
Anyway, back to the distribution of funds. Based on the above breakdown, if you had donated $100 to Relay for Life hoping to show your support for the honorary chairpersons, $12.50 would have gone to research adult cancers, while only 70 cents would have gone to childhood cancer research. How much of that 70 cents would be for neuroblastoma research? None!
Let's look at this from another angle. Gwinnett Relay For Life's group of honorary chairpersons was 95 percent children, but only 0.70 percent (that's right, less than 1 percent) of the donations would go toward childhood cancer research.
I think there's something wrong with this picture. Don't you?
I'm not trying to get people to stop donating and participating in Relay for Life. The American Cancer Society does a lot of good for the adult world of cancer.
But if you see a bald child suffering from cancer and feel compelled to help cure childhood cancer, please research organizations that put children first and support those organizations.
When Shelby was first diagnosed, the drugs used in her protocol were all "hand-me-down" drugs developed and tested for adult cancers. Once they went through the five to 10 years of testing to be FDA-approved for adults, they had to go through another five to 10 years of retesting and reapproval for use in children. Not one drug that was used in Shelby's treatment was designed specifically for neuroblastoma — or any other childhood cancers.
If childhood cancer is your priority, here are just five of the many organizations I would recommend:
• CURE Childhood Cancer
• The Aflac Cancer and Blood Disorder Center at Children's Healthcare of Atlanta
• CureSearch/National Childhood Cancer Foundation
• The Children's Neuroblastoma Cancer Foundation
• St. Jude Children's Research Hospital.
These organizations are strictly dedicated to childhood cancers and other life-threatening diseases in children.
You may think I'm biased because I'm the parent of a child with cancer. I also am the husband of a woman with cancer. My wife was diagnosed with breast cancer in October. Her mother died of breast cancer seven years ago. There is a huge need for funding in all areas of cancer research, but please take the time to pick the right organization to put your money into.
If it's breast cancer research or colon cancer research, by all means, get a team together and walk in the relay. But don't walk in memory or honor of a child. It will only be a waste of your time and resources.
The Prescotts' daughter, Shelby, was a kindergartner at Gwin Oaks Elementary School. She died Oct. 22, 2004. She was two months shy of her sixth birthday.
Thursday, March 09, 2006
We continue to be blessed!
Tuesday, March 07, 2006
A long day down, 2 to go
Monday, March 06, 2006
Can you hear me now?
This photo is of Ryan and Matt in the announcer's booth at the Thrasher's game Saturday night. They had a great time, but grew bored with the game pretty quickly. They were happy just to play and eat their Dippin Dots!! It was nice to have everyone back home under one roof last night. Heidi had been at 4-H for the weekend. She did a project on stem-cell transplants and won 1st place. Can you imagine our visual aids?? Ryan was happy to loan her his tubies, but he made her promise to give them back! He started his SSKI this afternoon. He downed it without a complaint. What a trooper! He gets his MIBG injection tomorrow. It is a bummer he will have to have 2 IVs this week. Normally his injection is after his CT and they use the same IV. We have been spoiled with that routine, so I really can't complain. He seems to be feeling better, but is pretty irritable. I can't say I blame him with the week he is going to have. Please, please pray for clear scans. I will post again when we get results. Ryan is going to spend the night at the Chattahoochee Nature Center Saturday night with Camp Sunshine. He is really looking forward to it. Thanks for checking in on us and have a great week!! Love, Les, Missy, Heidi, Will, and SuperRyan