- 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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Thursday, June 30, 2005
Splashing with Jena and Will (can you see our Will?)
"Can I help you?"
Monthly check-up, looking good.
Wouldn't it be awesome if all our friends left the doctor's office today with the same good news?Ryan's counts were all good as well as the markers in his urine that signal the presence of NB. He got to go to work with Dad this morning and be the "boss". He played a little golf, watched some cartoons, played darts, raided the candy machine, drank a Yoo-hoo, a coke and a Dr. Pepper, played Frogger, and drove a gas powered remote control dirt buggy. All the usual stuff at the office. He will get CT and MIBG scans again in mid-July. I can't believe it's time for them already. He did so good with his blood-draw today. Most times he can get just a finger prick, but every once in a while they need too much blood for that, and it requires a stick in his arm, like today. He has gotten pretty good at tolerating the finger prick, but he was proud to tell me that he laughed when she stuck him in the arm today. What a great nurse! He didn't even want a bandage. He finally weighs 40 pounds. Our vacations helped get us over that hurdle, at last. He also grew 3/4 of an inch. We adopted two adorable little puppies this afternoon. We haven't completely decided on their names, but the kids are having fun playing with them. We figured if we got two, they could spend their extra energy playing with each other. Jena and Will came and swam with the kids tonight. They had such a great time. Her group, Has-Been Beauty Queens, won the Cosmo-Girl contest. They will receive $10,000 for their next project, another pageant at The Hole In The Wall Camp for kids with Cancer. I think it is in Connecticut. Their pictures, and Ryan's is in this month's edition of Cosmo-Girl. We had a little autograph signing party!! Please say a prayer tonight for our friend, Ethan, and his family.
Wednesday, June 29, 2005
One year after Ryan's 1st Surgery
One year ago today was, for me, the worst day of all. We were so hopeful that Dr. Pitt would be able to completely remove Ryan's tumor, and that would be that. We received calls every half hour or so from the nurse in the operating room just to let us know that he was alright. Even though they had warned us that it wasn't likely, we were just not prepared to hear that he had removed only nearby lymph nodes that "looked involved". We are so thankful to our wonderful nurses and docs who cared for all of us over this past year and led us to where we are now. To have Children's Healthcare in our own backyard is unbelievable!! We are thankful, too, to our friends and family who have prayed so hard for Ryan and offered such tremendous support to our family. Tonight we are taking Ryan to the "peanut place" (Logan's Roadhouse) for something of a celebration with his Nanny and Granddaddy. I spoke briefly with him this morning about his first surgery, but he really doesn't like to talk about it. It is God's blessing that it is so easy to remember the funny things. My strongest memory, or at least what I allow myself to remember is Will asking to see where "they cut him open" and his answer was "Mom, will you tell him they didn't cut me open?" You gotta love kids!Thanks again to all, Les, Missy, Heidi, Will and SuperRyan
Tuesday, June 28, 2005
Urgent prayers for Ethan, please
I woke up this morning to some frightening and terrible news. Our friend, Ethan, is back in the hospital with fever and pain, and they have found new tumors on his remaining kidney and possibly in his lungs. He is the sweetest 4 year old boy that was across the hall from us at transplant. Please pray for strength for his parents, Julie and Chris, and for his brother and sister, Ryan and Haley. Ethan has Wilm's Tumor that comes from the kidney. Treatment options seems few at this point as he has already had very aggressive therapy. Please pray that the cancer has not spread to his lungs, for a good treatment plan, and for strength for Ethan to endure. The Alain's are a special family and could greatly use words of encouragement. You can click on his link to offer your prayer and support.
Saturday, June 25, 2005
Come on down to the Lighthouse
It is nice to be back home, but we had the most awesome week at the Lighthouse Retreat in Rosemary Beach, Fl. Please visit their site to learn about this wonderful group of people. We had busy, but relaxing days. It was so great to meet more families who have had similar struggles, and to be able to offer and receive encouragement. The kids stayed at the beach most days, but we managed to get to the waterslides in Destin one day with another family and Meredith, Patrick, and their sister, Sarah. The Howards were so great to us and we are looking forward to getting together with them next month at their home in Alpharetta. Will and Ryan performed spectacularly in the Talent Show, as well as their Dad. Maybe I can post a picture of Les in his grass skirt or as Simon Cowell later. :) It was so awesome to watch all the kids perform and see their huge smiles knowing how sick they have all been during their cancer journey. The kids did not want to come home, but with the promise that we would start our search for a puppy, they gave in. So cross your fingers for us that we have better luck than last time. We don't need another Tucker. :) We'd just like to thank again, the Howards, Melinda, whose dream it was to create a wonderful seaside escape for families of children with cancer, Clay, for his awesome words and stories to teach us that God is good, God cares, God is in control, and that God wants us to know him, and to the many, many volunteers who worked so hard to make us feel welcome and a part of their Lighthouse family.
Man, that sun is blinding!
Ryan trying to slow down time with Steve
Loving life at the beach!!
The Morgans and our Family Partners, Steve, Pat, Meredith, and Patrick Howard
Sunday, June 19, 2005
Heidi and the boys in Nassau
"They can't bother me now"
Counting our lucky stars!
Wow, one year. It is hard to believe you can run this seemingly endless race and and not collapse. Thank Goodness we are in a place right now that is so close to normal it's scary. Ryan looks great. When he runs, I just expect him to limp or tire, but he doesn't. His strength is growing as fast as his hair! The accutane side effects (which are miniscule in comparison) and his 13" scar from surgery are the last remaining signs of his year long battle. The real comfort zone though, comes statistically in 2009, the five year mark. That will be a true day of thankfulness and celebration for all of us. If a set back does befall us between now and then, we are prepared to meet the devil head on and beat it again, the same way Ryan has kicked its butt this time. (Just for the record, I'm not calling it out!)
Well, we are leaving for Rosemary Beach, Florida bright and early tomorrow to the Lighthouse Retreat. We have been told that this is truly a memorable experience at the beach with about eight other families attending also. Lots for the kids to do like Beach Olympics, sandcastle building, and a host of other activities. Expect more pics next week as we can take our PC and keep the site updated!
Hey, it's Father's Day!! It was awesome as usual here, pancakes and bacon to start, three perfect presents from three perfect kids, and great weather. I hope that all dads out there found some little way to revel in the joy of such a great and rewarding responsibility it is to share our life and lessons with our children. Happy Father's Day.Thanks for keeping an eye on Ryan and all of us in your prayers.Les, Missy, Heidi, Will and SuperRyan.
Thursday, June 16, 2005
An anniversary you'd like to forget
It was one year ago today we first began this journey. We had no idea on that day when we took Ryan to see his pediatrician, that we could find something so horrific. Who would have ever thought your child had cancer? We will never forget when our wonderful GI doc came in and told us there was a mass in Ryan's abdomen. We knew there was something wrong, but not that! I have always been a firm believer that no one knows your child like you do. Our pediatrician truly believed Ryan had a virus, and only sent us to a specialist at our request. We have heard countless stories of children who visited their pediatrician for months before being diagnosed, which, of course, allows the cancer to spread even more. We don't blame our pediatrician, we still see him. As crazy as it sounds, cancer is rare in children, especially Neuroblastoma. You wouldn't think so after all the kids we have seen and how busy the clinic and hospital floors are. So our message is this: if your child is sick, don't give up until you get real answers. As much as we hated to find what we did, we are very thankful to have found it when we did, and not months later. Ryan got very sick, very fast. So, we are thankful to all of you for your prayers and support over this past year. We have endured what hopefully turns out to be the most difficult year of our lives, and the key word is ENDURED. We have all endured and are stronger for it. We have learned so much, not just about cancer, blood counts, and human anatomy, but about life and how to TREASURE what you have been given. I could go on about that for a long time, but I think you know what I mean. There will be more days in the coming month where we look back to last year. The first weeks were the worst. The first chemo and the first surgery bring back nightmares. We are so thankful to be where we are, and we truly believe that God is listening to all our prayers. Please continue to pray for Ryan's cure on this earth and a cure to all cancers for people everywhere. Love, Les, Missy, Heidi, Will, and SuperRyan
Tuesday, June 14, 2005
We are celebrating life!! Isn't it great?
We are all getting some needed rest after our incredible vacation. It was hard to choose pictures to put on the site. There are so many. We had great weather on the cruise, and just a bit of rain in Orlando. We went to Disney World on Saturday, and had an awesome time. The kids were begging to get off their feet by 6 o'clock. Their favorite ride was definitely Space Mountain, a jerky, very fast roller coaster in the dark. We have decided they have outgrown the Magic Kingdom :( ...they want thrills, not magic. I have to share some great moments from the trip: feeding the sting-rays in Nassau was "so cool", snorkeling on a reef off Castaway Cay was mine and Heidi's favorite, Ryan and Les were in a limbo show in Nassau with a flaming limbo bar (Ryan was held over the flame, another "really cool" moment), making flubber was fun, you can only imagine how much the boys loved the jousting and sword fighting at Medieval Times, and Will was thrilled to get slimed poolside at the Nick Hotel. Medieval Times gave us complimentary tickets and a personal greeting during the show. The kids liked being able to eat with their fingers there. You have to eat everything, including your soup without silverware. We got some funny pictures of the kids dressed as knights and damsels. I will scan them another day and post for you to see. They are hilarious. We are enjoying a slow week before we head back out to the Lighthouse Retreat next week to continue our celebration of life. Please keep Ryan and all his cancer buddies in your prayers. Love, Les, Missy, Heidi, Will, and SuperRyan
Thumb up, Sponge Bob
I bet I am the only pirate with a ring in my belly button!
do you know these guys?
"but I wanted to hold his hook!"
Thank you, Embassy Limousine. This was awesome!!
Thursday, June 09, 2005
Just getting started
Oh my! Where to begin? We got off the ship early this morning and are visiting with friends in Cape Canaveral before heading to Orlando. We are dining at Medieval Times and watching the jousting show tonight. It has been such a whirlwind. Our limo arrived right on time Sunday morning. It was a party limo with full neon lights and bar inside. The kids had a ball playing with all the bells and whistles. Ryan could stand up! He liked raising the partition between us and the driver and yelling "Can you hear me now?". We were cracking up the whole way to the airport. Our flight was smooth, thank Goodness. The lines getting on the ship were so long, but thanks to Les (that he is Canadian) we skipped to the non-US line that was empty! Then we got priority boarding, so that got us out of another long line. We had a little trouble checking in, when we realized that our rooms were NOT next to each other, like we thought. It must have all been part of God's plan, because he had put a social worker in the room beside us and they were more than willing to trade. Our rooms were awesome with a door inbetween. I cannot say enough about the service. The ship has about 1000 crewmembers on board, and not one of them the least bit grumpy. I will try and post some pictures after we get home on Sunday, or early next week. There is still so much to tell you, but suffice it to say, we all had an awesome vacation. It was just what we needed. We will be at the Magic Kingdom tomorrow, and we still haven't decided how to spend our Saturday. We may just be hanging out at the Nick Hotel. They have a huge waterpark. Thanks for checking in with us. Love, Les, Missy, Heidi, Will, and SuperRyan
Sunday, June 05, 2005
sailing into the wild blue yonder
Aboard the Disney Wonder!! The limo will be here in an hour. We are packed and ready to roll. We couldn't possibly have forgotten anything, right? We had an early start yesterday with our Swim Meet, 8 am warm-ups. The pool is still so cold with all the rain lately. A couple of the little 6 and unders jumped in, turned around, and jumped right back out. In all the years our kids have been swimming, I have never seen that! Ryan did well despite the cold. Nanny and Granddaddy came over to see the kids before bedtime. Thanks for the spending money. Ryan got upset once tucked into his bed. He is going to miss home. He should get over that pretty quickly. Bon Voyage!!
Lots of colorful ribbons
Thursday, June 02, 2005
Rain, rain, go away
We got a good check-up from Drs. Anderson and George today. We won't hear the results of his urine test until probably after our trip. We experienced a first today- it was the first time they took blood and he didn't cry-at all! Usually, he puts up quite a battle and even runs and tries to hide, but none of that today. I was so proud of him. We saw Caroline and her mom and dad. We hadn't seen them since we left Egleston. She looks great with her blonde hair growing back in. They are getting ready for post-radiation scans, so please say a prayer that her scans are clear. Ryan has counted down every day this week. We are leaving early Sunday morning for our cruise. We will get off the ship on Thursday and stay a few days in Orlando before we fly back home on Sunday. The kids are excited about Disney World and we are going to Medevil Times to see the show. Ryan has always had a thing about knights. We pick up Heidi tomorrow afternoon. We have missed her so much. I just hate that the weather has been so bad this week for camp. The kids have their first real swim meet Saturday morning. We will be swimming against Dacula and Cumming, two of the larger, stronger teams in our league, so cross your fingers that everyone will come home with a ribbon. First place or eighth, it doesn't matter to me. Ryan will be the first to tell you that. He has to remind Will of that several times every meet though. He always tells him to remember it is supposed to be fun!! Thanks for checking on us and please sign his guestbook.