- 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 31, 2007
Please say a prayer for our little buddy, Luke
I got a call tonight from a new friend we made at our Lighthouse trip in June. Her son, Luke, is back in the hospital in Orlando. He started complaining of pain in his leg and a bone scan lit up. Aspirates of his marrow have come back positive and they are facing an MIBG tomorrow. Please pray for their courage and strength. They are such a sweet and adorable family. You can visit their site at www.luwebb.blogspot.com
and see pictures of Luke's cute little face. Chemo went ok today. My friend, Diane, came back to keep Ryan company and play games. She brought him some teriyaki wings-one of his favorite things! We got the pictures back from Flashes of Hope yesterday,and are they ever beautiful!! They are all black and white and we will post a few soon. Please keep praying for Ryan and all his friends. Luke's mom and dad are just reeling from this blow and could really use our prayers. Love, Les, Missy, Heidi, Will, and SuperRyan
Yesterday was a very heavy day at the clinic. I am sure little Nathan had much to do with that. I had some difficult conversations with Dr. Rapkin and Dr. George. My old and dear friend, Diane, came out and sat with us the rest of the day. She is going back today to play I Spy cards with Ryan and to take him some teriyaki wings. I am so thankful for my good friends. I had to stay home today to take Heidi to an appt. so I am very lucky that my mom and dad could take Ryan for us. One good bit of news was that Ryan's weight was back up over 21 kg. He weighs about 46 1/2 pounds. All of that good Lighthouse food did it! His hgb was already 8.1 so it didn't ever get very high. They will re-do labs tomorrow and probably go ahead and give him red blood on Thursday or Friday. Our plans right now are to go back for the next round after a two week break. I don't know yet anything about harvesting his stem cells, but I do want to get that done. Please keep Ryan in your prayers. The pictures are of his cake (thanks, Nanny!) and at the beach with Macie and Lanne (check out that smile!) . Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, July 29, 2007
Praising God & good medicine for Clean Marrows
Sorry for the delay in posting. We didn't have any service all week at the beach. Ryan's bone marrow aspirate went incredibly smooth-the whole day did. He didn't even complain of pain too much in the days afterward. His blood levels showed an upward trend so we did not transfuse. We did a little birthday shopping and saw the Harry Potter movie on the IMAX. Heidi and Will did well at the state meet. Heidi brought home a 4th place medal in the short free and a 3rd place medal for her relay team. Will's relay team finished 7th. They are definitely going to enjoy sleeping in for these next three weeks. We headed down to Grayton Beach Monday morning for the Lighthouse Family Retreat. It was such an awesome week and we are so very thankful to Melinda and all the volunteers. We had more of the Peck family as our family partners. Smith's brother, Jay, his wife, Deb, and their son, Lanne were so good to us. We were so happy to see the Howards, but we sure missed their kids!!! It was so nice to get away and laugh. There were times I laughed at Melinda and Ryan until my sides ached. There were many exciting and great moments during the week, but the best was the phone call from the clinic that Ryan's marrows and bone biopsies were clear!! I am so anxious to talk to them tomorrow when he goes in for chemo. Today was Ryan's birthday party with all his little friends. He had a scary spooky party. We pulled out all the Halloween decorations except for the pumpkins. His grandmother made his birthday cake. He wanted a cake that looked like kitty litter (with kitty poop, of course). Matt stayed tonight with him and is going to the clinic with us tomorrow. It sure helps Ryan to have him with him. The day just goes by so fast. I am hoping to learn about our appeal to the insurance company to get approval for the stem cell harvest. Thanks for checking in on us. Please keep praying for Ryan and for a cure for all cancers. Please pray for Nathan's family as they are grieving the loss of their son to this horrendous disease. We will update later with more pictures and details of our week. Love, Les, Missy, Heidi, Will, and Ryan
Tuesday, July 17, 2007
Happy Birthday, Will!
Ryan has been feeling great since we got home on Friday afternoon. He went with his Uncle Steve and cousin Nick to the Georgia Force football game on Saturday and had a great time. We heard he bypassed autographs with the football players to get a few from the cheerleaders! Sounds just like Ryan. Will was bummed he couldn't go, especially since he got the tickets for them. He and his buddy, Jackson, attended a Ga. Force football camp last week and got some great tips on playing football. He is going to try his hand at it this fall instead of soccer. It is going to be a big change for all of us. He has played with a lot of the same boys for a long time. Heidi and Will had to swim Saturday at League Championships. They did well and brought home all kinds of ribbons and medals yesterday at practice. Sunday was Will's birthday party. The rain held off long enough for all the kids to enjoy the pool. Ryan had labs drawn yesterday afternoon in Athens, we stopped for a quick visit with his teacher to see Adalynn. She is really growing. They have started a blog to keep their friends and family informed on Adalynn's surgeries and progress. If you would like to visit their site, click on http://www.abcfrye.blogspot.com/ Ryan's next appt. is Thursday for his bone marrow aspirates/biopsies. Thursday is also Will's birthday, so we are going to see the new Harry Potter movie at the IMAX if Ryan is up to it. Please pray that he won't have too much pain and that the results will show no cancer. We are fearful the insurance company may not want to pay for the harvest and storage of his stemcells if there is no plan as to what to do with them. We will certainly put in a good plea for that, but first it has to come clear. We will post as soon as we get results. I just got a call from the clinic with Ryan's lab results. His white count is good, but his hemoglobin and platelets are at or near transfusion levels. Since he shows no signs of slowing down, and it looks like his counts are climbing on their own, we will hold off until Thursday to see where they are then. Unless, of course, he starts to feel bad, then we will go on in. Thank you for your prayers for Ryan. Please continue to pray for a cure for everyone. Love, Les, Missy, Heidi, Will, and SuperRyan
Friday, July 13, 2007
Not so unlucky for Friday the 13th!
Just a quick update to let ya'll know that we are home. We got a shock when Dr. Woods came in to see Ryan. After looking closely at his counts, he decided that Ryan was feeling too good to be in the hospital. We got home around 3 and Ryan got to play and swim. Thanks for all your prayers, and please pray for our friend, Taylor, whose recent MRI showed new tumors in her lung. They are hoping a new chemo will do the job. Love, Les, Missy, Heidi, Will, and SuperRyan
Thursday, July 12, 2007
Back to the hospital
Ryan woke this morning with a high temperature, so it was off to Scottish Rite first thing. The one bright spot was my mom got into town safely, although a little late last night and Ryan rode shot gun with me to the airport to pick her up. It made him happy that she could go with him and Missy. We are praying for just another 2 day'r. Wish Ryan luck and good healing powers. Les, Missy, Heidi, Will and SuperRyan
Monday, July 09, 2007
Faster than normal weekend !
Saturday was the state qualifying meet about 1 1/2 hours up the road. Ryan chose to play the whole day at Matt's house and ended up coming home with one of Matt's bikes that he mastered while he was there. He was so proud of himself. He has been riding it every day. Both Heidi and Will qualified for state in various events so we will find ourselves near the Florida line for that meet in 2 weeks. We plan on heading straight down to Gulf Trace, Fl. after the meet to hang out with our good friends Melinda, the Howards and the Pecks at the Lighthouse Retreat. We get to bring my mom down this time so we can't wait to share the awesome experience with her. One of the events this weekend was the opportunity to take Ryan to Road Atlanta and ride with the BMW race club courtesy of our friends Chris and Julie Alain, Ethan's mom and dad. We had a great driver named Jon Bridges (Jon & Amy Bridges also are deeply involved with the Lighthouse) who drove Ryan around the track several times on the parade laps. Jon gave Ryan the choose of a driving in a Porsche or BMW, he picked the Porsche ! We road behind them in a Beamer. At 50-80 mph, it seemed pretty darn fast when your not the one driving. We talked Missy into a few hot laps after that with Jon reaching 140 mph in tight traffic! It took the rest of the afternoon to stop her stomach from spinning. Ryan on the other hand has been feeling really good still and we are praying we can make it through the week without having to check into the hospital. Thanks for checking in on Ryan. Love Les, Missy, Heidi, Will and SuperRyan
Friday, July 06, 2007
Not a bad week.
Ryan is finishing up Round 4 today. My mom and dad took him so I could be at the pool with Heidi and Will this morning. He is going to get red blood after his chemo today. Maybe that will help keep us at home next week. We met with Dr. Katzenstein Thursday morning to talk about clinical trials and where to go from here. His advice was basically to keep going with the same meds we are getting. Switching to something else would mean taking drugs less studied and with fewer numbers to back it up. No need to do that now. We know these drugs are working so we will keep going with them. Bone marrow aspirates/biopsies are scheduled for July 19th. We probably won't repeat the MIBG for a couple of months. At some point, probably Spring, we will look at switching to something lighter and easier. Ryan's cousin, Nick, kept him company Monday and Tuesday. Will and Les went with him on Wednesday. He asked to be de-accessed and they picked up his buddy, Matt, on the way home. They got in a good swim before we went to Medieval Times. The kids had a great time and we got a great picture of all the boys. I will try and post it later. Matt kept him company yesterday, and his teacher came by the clinic for a visit. She had brought her new baby to the hospital for an appt. The baby, Adalynn, is doing great and surgeries are already scheduled in Sept. and Dec. to repair her lip and palate. Heidi and Will have their state-qualifying meet tomorrow so we will be heading to Clarkesville for that. We are getting really excited for Gramma's visit next week. She will be here on Wednesday, and Les' brother is flying in from Vegas for a weekend visit, too. We are crossing our fingers and toes that Ryan will stay fever-free after this round of chemo. Thanks for checking in on us. Please keep praying. Love, Les, Missy, Heidi, Will, and SuperRyan
Monday, July 02, 2007
We were so excited to pick Ryan up Saturday morning, and surprised that it didn't take long for him to ask about going to the clinic on Monday. He was mad about having to go, but it wasn't hard to take his mind off of it. He had so many stories of camp to tell. We are so thankful to everyone at Camp Sunshine and to all the volunteers who made his week so special. We picked Matt up after an hour or so and went to see Ratatouille. They swam and had a great time. We had a nice lazy Sunday together. We got a little bit of a late start this morning thanks to the traffic, so we didn't get out of there until nearly 4:00. His access and counts went well. He is starting with a hemoglobin of 8.8, so we will re-check them on Thursday to see if he needs a transfusion. Our nurse reminded us that bone marrow aspirates/biopsies will be repeated a couple of weeks after chemo is done. Ryan is going to hate that. He has had much more pain with the last two than he did when we was 6. We are going to Medeival Times on Wednesday for a festive July Fourth feast. The boys are really looking forward to that. We hope ya'll have a great holiday. Please continue to pray for Ryan and for a cure for this disease. Love, Les, Missy, Heidi, Will, and SuperRyan