About Me
- 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.
Thursday, September 29, 2005
Counts are good, and he feels good
Ryan impressed Drs. Anderson, George, and Rapkin today at the clinic. His counts are relatively good. His platelets are down a little, probably due to fever. I can't tell you how many times I heard "fevers eat platelets" over the last 15 months, and that a rise in your white count means your body is probably fighting something. So we had both, but his hemoglobin is the same as last month and everything else looks great. Even this far out of transplant, his marrow is still recovering. We will get the catecholomine numbers early next week. All the docs pretty much agree to re-scan in 2 months. They will start with a CT and MIBG and see how it looks to decide if we want to redo the PET or not. Les and I feel good about that. So long as he feels great we don't want to do anything more invasive at this point. No fever today, and if that continues we will head to Family Camp at Camp Sunshine tomorrow afternoon. Ryan has been counting the days, so please say a little prayer that he gets over this virus and has no more fever. Thank you all for your love and support. Your kind words really got us through this terrible scare. Love, Les, Missy, Heidi, Will, and SuperRyan
Wednesday, September 28, 2005
Clear, Gloriously Clear!! Praise God!!
We heard from Dr. Anderson just shortly ago. The PET scan is negative!!! I had already braced myself for the bad news, so this is so incredibly awesome. I am on top of the world. Thank you all for your prayers for Ryan. I have to believe that God is listening to us. Dr. Anderson is still nagged by the increased uptake on the MIBG, so he will be talking to Dr. Katzenstein at Egleston about where to go from here. Our appt. tomorrow is perfect timing. I talked to him about his fevers and he feels it is something viral, not related to cancer. When you have a child with cancer, you look at every little ailment differently. Everything becomes a possible symptom. So that is it for now. We will be celebrating tonight, even though the kids don't know anything about it. We try not to let them know about every possibility. Why give them something to worry about if there is nothing? So, thank you, thank you, thank you, from the bottom of our hearts, and please keep praying for Ryan to live to be an old man with great health and happiness. Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, September 27, 2005
Little fever, little cough, still a runny nose and no results
Well, we were right about one thing. Emory is not a children's hospital. We got a little room as soon as we arrived, and it was then we noticed he felt a little warm. It is amazing that you can't get children's Tylenol in the gift shop at Emory or at Egleston. By the time I got back, his IV was done and over, and he and Dad were resting comfortably. It wasn't too long after that when we found out we would not be able to stay with him during the scan. Something we just hadn't thought of. I felt terrible for him. His head was strapped to the table, his feet bound together, and his arms were cinched to his sides with towels, then a full torso vest velcro'd him to the table . He lasted about 25 minutes before someone came to get Les. Ryan was upset, itching, and probably a little claustrophobic. Les stayed with him for the next 20 minutes until it was done. I do want to share the one funny thing that happened that gave us all something to laugh about on the way home. I don't think the radiological running Ryan's test today quite knew how to deal with a 7 year old. First, he told him to "empty his bladder", then I think he realized he wasn't talking to an adult, he told him to "go make pee-pee" before the scan started. Ryan and Dad had fun with that all the way home. We stopped in very quickly to see our favorite nurse, Dawn. Thanks so much, Dawn, for your help and kind words today. He got to go play with his friends, Max and Rachel, for a few hours before his soccer game. He was so happy they got to come to his game. Thanks, Val. I can't believe how hard he played tonight. He really enjoyed it. We were sure hoping for the test results this afternoon, but I guess we'll have to wait until tomorrow now. As always, thanks for keeping Ryan in your prayers. Les, Misy, Heidi, Will and SuperRyan
Monday, September 26, 2005
Big prayers for tomorrow
Well, he doesn't seem to have the flu. He hasn't had any more fever today. We even went to see "Madagascar" this afternoon. It was a very cute movie. We will be off early in the morning for Emory. We have never had this scan before so we really don't know what to expect. We do know that we have been spoiled at Scottish Rite and Egleston where everything is geared for children. I doubt there will be movies for him to watch or clowns to come by and make him laugh. We expect to get results on Wednesday, and we will post just as soon as we hear. Please say big prayers for no cancer. Love, Les,Missy, Heidi, Will, and SuperRyan
Sunday, September 25, 2005
Two days off school, Yahoo!!
We had a great Saturday at soccer, followed by their cousin Nick's birthday party, swimming, football, and baseball. Will and Ryan insisted on spending the night and stayed up way too late, but had a blast. We got a call the next morning that Ryan had a little fever. We have kept Tylenol in him, but it comes back after a while. He has a bit of a cough and runny nose. We have been a little worried, but are thinking he may have the flu. It would sure be nice if that's all it is! We just don't want his scan on Tuesday postponed. The kids are excited to be out of school Monday and Tuesday due to Georgia's gas conservation efforts. Heidi and Will started their etiquette class today. I think they actually enjoyed it. They met a lot of kids . Today's lesson was about making introductions. I think they had most fun learning a line dance. Thank you all so much for your prayers for Ryan and our family. We have come so far since last June, and we just want to stay on that road to Ryan's cure. It is the road out of hell. This week we will celebrate the one year anniversary of Ryan's surgery when Dr. Pitt was finally able to remove all of Ryan's tumor. That was the beginning of things finally looking up. His marrows came clear, and the tumor was out. We feel he has had no cancer in his body since then, and we pray everyday it will never come back. Thank ya'll so much for taking this journey with us and for holding us up on days when we thought it could all fall apart. For that, we will be forever grateful. Keep up the good work! :) Love, Les, Missy, Heidi, Will, and SuperRyan
Friday, September 23, 2005
It is a go
We got the word yesterday that the scan has been approved, so we are set for Tuesday morning. We really need your prayers that this scan is clear. This scan looks for cellular activity, not anatomy. It will be nice to get answers., positive, healthy, cancer-free answers! On the home front, we are back to another busy soccer Saturday. Heidi and Will have us going in different directions for their games. I love watching them. They are both excellent players. It seems we've had a reprieve from things breaking down, but the fridge/freezer went out yesterday. It is only 3 years old. Thanks, Sears! I just hope we can get it fixed, and soon. I finally got my first paycheck, but I really didn't want to put it towards a fridge. The pictures are from Ryan's game the other night, our tubing trip in Blairsville, and check out Ryan coming down the chute. Yikes! Well, we hope all of you have a wonderful weekend with your families and friends and remember to enjoy each day to it's fullest. Thank you for all your kind notes and calls. And thank you for making this journey with us so much more bearable. Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, September 20, 2005
Go Ryan, Go!
Ryan reminds me every chance "no more pills". He is absolutely loving having no medicine to take. If you're wondering how he feels, he scored four goals at his soccer game tonight!! He played goalie for part of the game. I know he felt just as big as Will tonight, and that's pretty big in his eyes. Thanks, Jena for coming to cheer him on. He was thrilled to see you. And, thanks to your mom for taking all the pictures. Between getting the kids ready to go, feeding them, getting them to do their homework, and it being our night for snacks and drinks, I forgot my camera. Imagine that!! Ryan and Jena's picture is in the new issue of CosmoGirl. It was a followup to the contest edition. It is nice to have a week without any appointments. We have sure had our fair share of those lately. We make 2 trips next week for his scan and then his regular check-up is on Thursday with Dr. Anderson. Please keep praying that his scan will be beautifully clear. If you would like to visit more sites of our friends, you can get lots of links on Catie's site http://www2.caringbridge.org/ga/catie/ Catie is a sweet little girl who is fighting a brain tumor. She is about to begin radiation, so please pray that this will be her cure. Thanks for keeping us in your thoughts and prayers and for your uplifting messages. Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, September 18, 2005
AccuDone!!
Thank goodness for the end of 6 rounds of Accutane (or, more accurately, craputane as Chandler's mom puts it). Ryan is sooo happy to be finally finished. He has always been aware of the scratch type marks on his face and really dislikes them. If he saw a mirror, he would have to stop and inspect his complexion. These 6 months have definitely been the easiest part of Ryan's treatment, but long and grueling. We started his day with his favorite breakfast then packed the kids up and headed to Lake Lanier Water Park. He absolutely had a blast. We cruised back home, got cleaned up, and headed to his favorite restaurant, Logan's ("the peanut place") with his grandparents. The picture is of him getting ready to down the last two pills. I will be happy not to have to unwrap them from their package. The packaging on these pills is unbelievable. I wish we could have had the incredible celebration that I have imagined for the last 15 months to mark the end of his treatment. We focused our celebration today on the end of Accutane, and we can celebrate again in a few weeks when Ryan's scans come back clear. I can deal with those little disappointments. Please keep him and all his friends in your prayers. We are looking forward to a normal week ahead . He has a soccer game on Tuesday night. I will try and post more pictures in a few days. We finished up a disposable camera at the park today! Thank you so very much for praying for Ryan and keeping our family in your thoughts. Love, Les, Missy, Heidi, Will, and SuperRyan
Saturday, September 17, 2005
T - 36 hours and counting!
The PET Scan has been scheduled for Sept. 27 pending insurance approval. I have poured over the link that Les added, and it is has been helpful in trying to understand just what it does. I wish they would do these always instead of the MIBG. He won't have to take the SSKI that protects his thryoid. He takes the last dose of that today, Thank Goodness. That stuff is awful. Ryan and Will's buddies, Matt and Jackson, came and spent the night last night. They had such a great time. Will and Heidi both have soccer games this morning. Fortunately, they will be at the same field and their games are one after the other. This will be our first year trying to juggle both of their games on Saturdays. Tomorrow we will celebrate Ryan's LAST DAY OF TREATMENT. He takes his last dose of Accutane tomorrow. I know the celebration won't be as exciting as it could have been without these scans. Just please pray that we will have even more to celebrate later this month when they confirm that there is no cancer in Ryan. Thanks for checking on Ryan, for praying for him, and for your kind emails and posts. Love, Les, Missy, Heidi, Will, and SuperRyan
Thursday, September 15, 2005
Going to try another scan
We heard back from Dr. George, and nothing shows up on the CT Scan. He is puzzled. He would like to do a PET Scan at Emory if our insurance company will pay for it. Les is going to add a link later that tells about it. I think he said it costs about $6,000. I guess that is where we go from here. Please, please, please continue to pray for no cancer in Ryan's body. And, please pray for Victor Lord's family. "Mr. Victor", as my kid's call him passed away yesterday. He was always someone special to see on the soccer fields and Ryan thought the world of him. Thank you all for thinking of us and praying for Ryan. Love, Les, Missy, Heidi, Will, and Ryan
More gray area...more gray hair
I was seriously hoping for a call from Ryan's nurse Erica but when Dr. George called you just know something is up. The MIBG scan has shown a greater "uptake" in the same area of Ryan's liver as before...not good news. However, the CT report has the surrounding area clear according to Radiology. Dr. George will make his way to Radiology this afternoon to re-read the CT scans with a very sharp eye. We should hear back by tomorrow. If there is any sign of tumor, it would be biopsied and confirmed, however the surgery is just too risky in that location (just below his heart) to jump the gun and biopsy without visible confirmation first. Either way, it looks like Ryan will likely be repeating the scans again in 6 weeks. Love Les, Missy, Heidi, Will and SuperRyan
Wednesday, September 14, 2005
What a good patient!
We waited patiently for a phone call on Ryan's last two scans but no word :( As usual, Ryan did a fantastic job with the 45 min. scan. He was as still as he could be! He is so amazing how he can put up with everything and make everyone smile. You can see that he, Dad, and Laura (our MIBG guru) all planned to wear their hockey jerseys. We should absolutely hear by tomorrow. Keep your fingers crossed. Les, Missy, Heidi, Will and SuperRyan
Monday, September 12, 2005
Please pray for clear scans
Well, this is the week we've been waiting for. Ryan's CT scan is tomorrow afternoon with the injection for the MIBG right afterwards. The 2 hours of drinking the contrast isn't so bad since they let us bring Gatorade to mix it with. He handles that pretty well, but I do dread the IV. He begs them to "Go slow, go slow!!" when they push the contrast and the flush through. He can taste it if they go too fast or if he has to lie down. The actual MIBG scan will be Wed. morning. He has to start taking the iodine after school today. I so hate it for him. I am so tired of all he has to go through, and then again, so thankful that he is here to do it. It is just so unfair that he should have to endure so much. It seems like learning his math facts should be enough!! Please pray, pray, pray for nice clear scans. We want to see for certain that there is no cancer there. He seems to feel good. He is tolerating the accutane fairly well. It has started to do a number on his cuticles. One or two stay sore and red. He is excited about his soccer game tonight. Heidi's team won last night. It was an exciting game. I just hope he has fun. I enjoyed Saturday's Tribute to Quiet Heroes luncheon. It was nice to see all the other cancer mom's we have met along the way and to meet moms of kids whose websites we have followed. I don't know about the whole "hero" thing. Any mom or dad would do for their child what Les and I have done. It's what parents do. I will just be glad when our cure is found and no mom or dad has to do any of it. I was captivated by Liz Scott who talked about her daughter, Alex's courageous battle with Neuroblastoma and Alex's selfless work to raise money for children's cancer research. Linda Armstrong Kelly is sure an amazing woman. I am glad I read her book, and I could certainly relate to some of her struggles during Lance's cancer treatment. Heidi and Will wrote letters to Lance thanking them for raising awareness and so much money for research. Ryan drew him a picture. I thought he might have drawn a picture of him on his bike, but Ryan marches to a different tune. He drew him in the factory making yellow wrist bands. He is definitely an original. He is our original and he just has to be alright. Thank you all so much for your prayers and support. I will post just as soon as I hear something from the scans. Love, Les, Missy, Heidi,Will, and SuperRyan
Saturday, September 10, 2005
Early start for busy kids
It was a 6 am start for Heidi and I to get to Norcross for her 1st soccer game of the season...they lost :( Better luck tomorrow at 5 pm! We raced back home to pick up Will and Ryan for Will's 11 am game in Jefferson...they won :) Picked up Heidi's friends on the way home, went to publix to get everyone's individual order for lunch, (Will and Ryan needed a smoked oyster poorboy), then whipped by the church to pick up items that didn't find a new home at the annual sale. Cleaned the pool for the girls, then Will, Ryan and I sat down to watch a little college ball. I lost the boy's when they realized Heidi and her friends were having too much fun. Missy made it back from the luncheon at the Westin. Lance Armstrong's mother was speaking along with Alex Scott's mother, (link at the right). She is off to her friend's daughter's beauty pageant, Grayson. She is speaking about Ryan as her role model. Hope she wins!! I'm sure Missy will have more details later. I posted one of Heidi's many writings below. It is so nice to read her work and catch a glimpse at what is churning on the inside when it comes to her life, feelings and Ryan. I guess this journal is somewhat the same, just a little less refined. Lots of love to all our visitors and thanks so much for keeping an eye on Ryan. Les, Missy, Heidi, Will and SuperRyan
Insight from our beautiful 12 year old
If I Were In Charge Of The World
If I were in charge of the world
I'd get rid of braces,
Bedtimes,
Homework, and
Hurricanes, too.
If I were in charge of the world
There'd be flying horses,
Elephants would be the size of a basketball, and
There'd be louder alarm clocks.
If I were in charge of the world
There wouldn't be mean,
mortification, or
even Cancer.
There wouldn't be cheesecake, or
raisins, either.
If I were in charge of the world
A sock would be called pencil, and
A tomato would not be a fruit.
And a person who sometimes digresses, and
Is most of the time forgetful,
Would still be allowed to be
In charge of the world.
Tuesday, September 06, 2005
Last weeks results
Just a quick update to let everyone know that Erica called this afternoon and gave us the report on Ryan's catecholomines. His numbers are basically the same as they were last month. Hooray!!! These good numbers ease the anxiety headed into next weeks MIBG and CT scans. We are hoping and praying for a "clear" not a "we're not sure" MIBG result. Lots of love to our families, friends and fellow fighters. Les, Missy, Heidi, Will and SuperRyan.
Monday, September 05, 2005
We managed to get away to Blairsville for a few days. I don't think I have heard the kids laugh as much in a long time. You can see their big smiles. We rode horses, tubed, panned for gold, and even strolled through a few antique stores. I took some pictures of our tubing trip with a disposable camera so I will try and post them soon. I don't think I have laughed that much in so long. Will and Heidi were very good entertainment. Ryan hung close to Dad, and they looked like old pros maneuvering down the river. We did the panning on our own. We hiked from our cabin down to a beautiful, clear stream. The kitchen utensils didn't deliver much gold, but boy, did they have fun!! Ryan started his LAST round of Accutane this morning. We were supposed to start yesterday, but I forgot to pick up his prescription last week when we were at the clinic. We are hoping it arrives in tomorrow's mail. We had a couple day's worth left over from the last round. So... his last day of treatment gets pushed back to Sunday the 18th. Please pray that this is indeed the end of his treatment, and that no other treatment will ever be necessary. I have been following another little boy's website.http://www2.caringbridge.org/fl/jacob/ It looks like they might be getting the miracle they have prayed for. Their story and their faith are just amazing. As I got out and hiked and just sat in the quiet listening to the stream below and the kid's laughing, I kept thinking about Jacob and his family and how much I wish they could have the same opportunity. I am so very thankful for everyday with my family. Another gift from this awful experience. Love, Les, Missy, Heidi, Will, and SuperRyan
Thursday, September 01, 2005
Another Good Check-Up
Ryan had a great check-up from Dr. Anderson today. It was one of those days where they need too much blood for a simple finger stick, so he wasn't too happy about that, but he was laughing soon afterwards playing games at the clinic. We had a lot of fun on the pinball machine while we waited. His counts were all good. The main ones they check (white cells, platelets, and hemoglobin) are either in the normal range or near normal. He weighed 40.6 pounds, which I celebrated!! I will be so glad when he passes the 42 pound mark he started at, except now he is a bit taller so it still won't be the same. The CT and MIBG scans have been scheduled for the 13th and 14th. He starts the LAST round of Accutane on Sunday, so he will be officially OFF-TREATMENT on the 17th, of course, barring anything showing up on the next scans. Please pray that it shows Ryan is cancer free!! Being off treatment is wonderful, but brings a great deal of fear in that you aren't fighting it anymore. That, I can deal with though!! Please remember all of Ryan's little friends that are still fighting, and the families of those who are now angels playing in the heavens. There are so, so many, and we learn of more all the time. Caroline has scans next week, so please lift her and her family up in prayer. These every 3 month scans are tough. Thank you all for your prayers for Ryan and our family. So many times your posts and emails have lifted us up when we desperately needed it. Love, Les, Missy, Heidi, Will, and SuperRyan
Happy Birthday, Dad!!
Just a quick update this morning. Ryan is feeling well with lots of energy. He is excited about the reading parade tomorrow at school. They have a big parade for all the kids who participated in the summer reading program. He is off to see Dr. Anderson this morning, and he and Will both have soccer practice tonight. Soccer was cancelled Monday due to the hurricane. We celebrated Les' birthday last night. He and Will helped me make a cake for him. They're good egg crackers!! All the kids took turns taking pictures. I think this one is Heidi's. Wish us luck this morning with good counts and no rise in his catecholomines. Love, Les, Missy, Heidi, Will, and SuperRyan
