- 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.
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Tuesday, July 29, 2008
Funs over :(
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
Sunday, July 27, 2008
Happy 10th Birthday, Ryan!
This was the scene at our house last Thursday night. A very scary scene! Ryan wanted to do a haunted trail at our house like we used to do for Halloween, and with the help of Rob Langston
we were able to make that happen. Rob has a spook house in Athens across from Ga. Square Mall. He brought out all kinds of goblins, lights, masks, and even some of his friends, and his dad to make it all terrific for Ryan. They even made him an official member of their staff. Ryan is hoping to go this Halloween and volunteer at the spook house and scare people. I think that is his favorite part. Thank you to so many of our friends who were able to come out. We had a great time and we thank you for making it such a memorable night.
Silver, Bronze and ORANGE!
Today was a big surprise for Ryan at Hooter's. Thank you Kasey, Tonya and Larry
for making it such a great time for him. Don't you love the shirts? There were many magazines to go around for all Ryan's friends (and their dads). Calendars, t-shirts, shoes, and a football autographed just for Ryan by Fran Tarkenton all packed into a "SuperRyan" monogramed suitcase! He could not stop smiling the whole time we were there. Also a very special visit from Hooters International winner, Brea Ashley. Thanks, also, for our friends that were able to join us. Ya'll are so awesome and we love you!!
All together we brought home 5 medals- and one very cute puppy-from Tifton. I won't go into details about the meet. Just know it was long, very hot, and there were many gnats! We did pick up little Dixie, an 8 week old mini-Dachshund, and Ryan absolutely loves her (as do the rest of us!)
Wednesday, July 23, 2008
Mask up !
The hard plastic is dropped into boiling water and turns very soft in a couple of minutes. It is then pressed and formed to Ryan's head and hardens very quickly. It locks to the table to keep his head immobile
during radiation. He can hardly
wait to play hockey in it
Yesterday's appts. went well
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
Sunday, July 20, 2008
Keep your eyes and ears open
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
Thursday, July 17, 2008
Birthday weeks coming up!
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
Monday, July 14, 2008
To the E.R.-just to be safe.
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.
Sunday, July 13, 2008
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.
Saturday, July 12, 2008
Ya'll Are Never Gonna Believe This!
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!
Friday, July 11, 2008
It's a 10
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
Wednesday, July 09, 2008
Checking in Tomorrow
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
Sunday, July 06, 2008
We shared a delicious dinner with my chemo buddies last night. I am so grateful for how good Linda and Karen were to me during my chemo days. We actually had some good fun during our every other Monday lunch dates in C-Bay. I stuck in a picture of Ryan's tattoo. I snapped it first thing this morning. He is wanting to play putt-putt golf today. We are thinking about heading up to Helen and tubing and, of course, a round of putt-putt. We have an appt. tomorrow at Emory to get his radiation set up. Please pray it doesn't worry him. You just never know. Thanks for checking in. Love, Les, Missy, Heidi, Will, and SuperRyan
A few new costumes...
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.
Friday, July 04, 2008
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
Tuesday, July 01, 2008
We're going in...
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